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  • Writer's picturePenn FTD Center

Dear Nurse: Asking for help from healthcare provider

Dear Nurse,

How do you know when it's time to ask for help from a healthcare provider?

If you’ve noticed changing behavior from your loved one, there are strategies you can utilize to manage behavioral changes at home. However, before we come up with strategies, it is important to consider if your loved one needs additional medical attention right now. There are three key questions about new or changing behaviors that can raise a red flag. If you answer “Yes” to any of these questions, you may need to call a healthcare provider so that they can further assess your loved one.

  1. Is this an acute (sudden) change in behavior or cognition?

  • Ask yourself if this change happened suddenly or if it occurred gradually over time. For example, have you found yourself thinking, “My loved one just doesn’t seem like himself this week” or “There seems to be a big change in my loved one since last Thursday."

If you answered yes, this is a time to call the Internist/Primary Care Doctor. Often times, sudden cognitive and behavioral changes are a sign of an underlying medical condition. If you are suspicious of an infection, such as a urinary tract infection (UTI), chest pain, coughing, or difficulty breathing, contact your loved one’s primary care doctor for a workup.  If you are not sure if the symptoms you are seeing is related to an infection, please give the neurologist’s office a call.

2. Is there a safety concern? 

  • Is your loved one driving when it is clearly not safe?

  • Is your loved one wandering? Hitting/kicking?

  • Is your loved one putting themselves, you, or others at risk?

If you answered yes, this is a time to call your loved one’s provider, who can discuss your options are to help address safety issues.

3. Are you distressed? 

  • Have you tried behavioral and environmental interventions such as those mentioned at the FTD Caregiver Conference and you’re still totally overwhelmed?

If you answered yes, this is a time to call your loved one’s neurologist. Caregiving is very taxing and it is important to know when you need additional reinforcements. The neurologist may be able to speak to programs such as caregiver support groups, respite care, home health aides, structured day programs, and other resources that can be helpful to you as a caregiver.

If you answered yes to ANY of these 3 red flags, you should consider calling your loved one’s Primary Care Provider and/or neurologist so that they can evaluate your loved one and create a targeted action plan.

If you answered no to ALL of these 3 red flags, you can use a Behavior Log or Medication Log to help determine if changes in behavior or cognition may be related to a medication change or environmental triggers. Keeping a log also serves as accurate documentation to share with your healthcare providers when discussing your concerns at appointments.

Using a log to develop at home strategies 

Behavior logs can be helpful when trying to understand and manage new and/or disruptive behaviors. First, identify the behavior of concern and note when it occurs. Keeping track of it for more than just a couple days can help you identify any patterns and triggers. Also keep a note on the log of any strategies that you try.  If you notice that a behavior is consistently occurring before 4 and 5 pm, timing a new strategies for 3:30pm might  help break the behavioral cycle.

Most importantly, record the outcome of any strategies attempted. Not every intervention is going be effective, so it is important to record both what you tried and the outcome. In doing so, you can determine exactly how effective an intervention was and whether adjustments to an intervention can make it more effective.

Additionally, this log is helpful for both identifying triggers and for understanding how often and severe the behaviors are. Once triggers are identified, you can use this Behavior Log to discuss with your health care team about creating plans to avoid triggers or to plan appropriate interventions that can address the behavior.

Behavior Logs can be adjusted and used as a Medication Log as well. Using a medication log can help you track your loved one’s response to new or increased medication. Additionally, it can help you identify whether symptoms you are noticing could be related to side effects or loss of efficacy of medications.

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. The 3 red flags, the behavioral log, and the medication log are all resources that are helpful to caregivers of patients with any neurodegenerative disease no matter if it is dementia or any other FTD spectrum disorder. If you are ever unsure whether you should be concerned about a new or changing behavior, please don’t hesitate to call your primary care doctor or neurologist to discuss any questions.

Decision Making in Advanced Illness 

The the four stages of FTD, which are mild, moderate, severe and profound, are defined by how much the person with FTD relies on their loved one for activities of daily living, such as getting dressed, eating, or bathing. Patients in the mild stage of disease are still relatively independent, but with time can become more dependent on help with everyday tasks. However, it is important to note that the progression of FTD is uncertain and the duration of the disease can vary anywhere between 2 and 15 years.

As the disease progresses, some common complications that can arise are increased likelihood of falls and infections, such as urinary tract infections and pneumonia. During advanced stages of disease, administering daily care can become more difficult, and families may consider hospice. Hospice is a service that provides interdisciplinary care by a team of individuals including doctors, nurses, home health aides, social workers, chaplains and counselors. Hospice is typically initiated when there is a life expectancy of 6 months or less, but this is hard to determine with FTD and in some cases patients need to be recertified after 6 months so that they can remain on hospice longer.

These are just some of the issues to consider when thinking about how best to care for your loved one. These important discussions about care are best started early, during the mild stage of illness, so that the patient and caregiver can make a plan together.

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