Dear Anna,
My spouse has been living with Frontotemporal degeneration (FTD) but she has been getting a lot worse recently.  She is having more trouble walking and getting out of a chair. She no longer initiates anything. She can’t carry on or follow a conversation anymore and when she does respond to us, she is so confused – she thinks we are still living at our old house. How do I know if these changes are consistent with the disease or if I should be worried?  Should I wait for our next appointment or do I need to call someone sooner and if so, who should I call?

Sincerely,
Just Want to do the Right Thing


Dear Just,
Caring for a loved one with a neurodegenerative disease is a demanding task and it is difficult to do alone. It can be hard to determine when you can handle the symptoms at home versus when you need to ask for help from the heath care team. Knowing when and who to call for help is difficult so I hope the flow chart below will help give you a guideline. In general, you should call 911 if the patient is in immediate physical danger to their health or their safety or threatening the health or safety of others. If it is not an immediate safety or health concern, then you can use this flowchart link as a general guideline.

Infection and any underlying medical condition can lead to cognitive and behavioral changes, so it is important to be informed about infection symptoms to watch out for, such as those associated with a urinary tract infection (UTI), lung infection, shingles, etc. Contact the patient’s primary care physician (PCP) for an evaluation and workup of infection if you are in doubt and be sure to send the records of this to the neurologist so that they are aware of the situation.

It is understandable that it is confusing and challenging when trying to decide the right course of action as you care for a loved one with a neurodegenerative disease. The flow chart below can help you determine who to call when more help is needed. However, this is not a substitute for medical advice.  If you are concerned about your loved one’s health, don’t delay in calling the primary care doctor or neurologist to discuss any concerns or new developments.

Best,
Anna Yung, RN, BSN


* Our previous newsletter featured an article about when to call for help versus when you can continue managing the patient at home.  If you missed it or would like a refresher, click on the link here to be taken to the article. In that article, we discussed the 3 red flags to watch out for as well as the behavioral log and the medication log, which are all helpful resources to caregivers of patients with any neurodegenerative disease whether it is Alzheimer’s or FTD.

*If you missed the Caregiver Conference or if you would like to review Caregiver Strategies for Managing Symptoms, please see the videos from the Caregiver Conference on our website at http://ftd.med.upenn.edu/secondary/media-library. You can find videos from the most recent FTD Caregiver Conference regarding Non-pharmacological Interventions (Anna Yung, RN from the 2016 conference and Brianna Morgan, RN from the 2015 conference), and Decision Making in Advanced Illness (Lauren Massimo), and other videos explaining FTD spectrum disorders.

* For more information about FTD and related conditions, please see: http://ftd.med.upenn.edu/about-ftd-related-disorders/what-are-these-conditions

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