Someone recently shared this long document about frontotemporal dementias with me. I’m not sure who wrote it. The person who shared it thought Teepa Snow might’ve written it. See http://camanocenter.org/wp-content/uploads/2014/01/Frontal-Temporal-Lobe-Dementias.pdf
PSP is considered a type of frontotemporal dementia. Here’s the very short excerpt on PSP from the document:
Progressive Supra-nuclear Palsy
* Movement and motor problems with balance and walking
* Problems with controlling smooth eye gaze and eye movements
* Problems closing eyes, even when trying to keep them open
* Problems with being able to make and keep eye contact
* Problems with swallowing and aspiration pneumonia early in the disease
* Apathy – lack of emotions, flat and none emotional, no energy and no interests
* Irritable and angry outbursts
* Depression
* Rapidly progressing dementia – spreading through the brain over months to a few years
I agree with all of this except the last bullet point. Not everyone with PSP experiences dementia. And, when the dementia is present, I would not call it “rapidly progressing.” “Slowly progressing” – maybe.
And, I’ve copied below two excerpts about a diagnostic work-up and what should be done routinely.
Robin
PS:
Diagnostic Work-Up – What Should Be Done?
- Consider seeking out a specialist in dementia evaluation, if symptoms are not typical for Alzheimer’s disease, as missed or mis-diagnosis is common
- Complete physical and neurological examination
- Complete medical history and history of symptom development from the person but also family or care provider (in private setting)
- Neuro-psychological testing
- Functional abilities in attention, language, visual-spatial skills, memory and thinking/reasoning skills, fine and gross motor skills.
- Brain imaging preferably a PET scan as it will show symptoms of specific areas of functional loss before the structures shrink a lot. If a PET scan is not possible, then at least a CT or MRI scan
- Blood tests, and other laboratory tests to rule out other possibilities
What Should Be Done Routinely?
- Complete durable healthcare and financial power of attorney decisions and paperwork
- Complete advance directive planning and financial planning
- Develop and use daily routines that include:
- Exercise – aerobic, strengthening, coordination, and flexibility
- Self-care – modify help as skills are lost
- Leisure activities – make modifications as skills are lost
- Work or productive activities – abilities may be lost early in the disease, use of time will need to be addressed
- Rest times – breaks in the action, sleep will need to be structured in and additional caregiver may be needed at night to ensure that the primary caregiver gets rest when insomnia is problematic
- Time away for the care partner
- Time out of the home – with friends or neighbors when mobility is adequate
- Get a speech therapy consult if language skills are being affected
- Check out Safety issues with skilled health professionals (OTs or PTs) – modify the home for specific safety concerns that are identified
- Check out the need for rehabilitation for mobility and functional losses (OT, PT, Speech)
- Continue familiar activities and groups (watching versus doing) – consider providing some education and training for others to help them in helping the person feel included and successful
- Look at care options and locations for possibilities as needs and abilities change
- Get counseling and support if mood and personality changes are affecting relationships and roles in the family and community