Although self-isolation and social distancing practices have been put in place to help control the spread of COVID-19, persons living with FTD may still face health emergencies that could require emergency care outside of the home. The current climate, however, presents many new challenges that require additional planning to ensure the well-being of both the person diagnosed and their caregivers.

If you find yourself facing a medical situation and are unsure if hospitalization is required, contact the primary care physician of the person diagnosed for guidance before going to the emergency room. Due to the current priority being given to COVID-19 cases, hospitalization and ER visits are discouraged unless there is a true medical emergency. The PCP may therefore advise that the person diagnosed remain at home or in their facility. If so, care partners should advocate for medication adjustments, referral to palliative care, or hospice for additional support as needed.

If hospitalization is necessary, the following tips should help care partners negotiate the additional challenges that the current pandemic will present:

• Learn beforehand which local hospitals are admitting people; some areas have designated specific hospitals COVID-19 only.
• If you need to visit a hospital, prepare as much as possible. Have a plan in place before a crisis occurs to help moderate stress for the person diagnosed and care partner. (Additionally, plan for a scenario in which the care partner becomes ill and requires hospitalization and can no longer care for the person diagnosed. More information on caregiver hospitalization during COVID can be found in this recent Expert Letter written by Dr. Ted Huey of AFTD’s Medical Advisory Council.)
• Be ready to adapt to newly mandated COVID-related restrictions that have been put in place to combat the virus (i.e. restrictions on who can ride in an ambulance or be admitted to emergency department exam rooms).
• In a hospital setting, a person with FTD needs an advocate. Do not assume hospital staff understands the realities of caring for someone with FTD. As Dr. Huey writes, “caregivers should make sure that all medical personnel interacting with the person diagnosed are aware that they have dementia, and that all of these personnel have contact information for the surrogate decision-maker.” Consider using a geriatric case manager, or social worker with experience in FTD, to help advocate for your loved one as a liaison between hospital staff, person diagnosed, and your family.
• Create an up-to-date medical fact sheet to post somewhere EMS providers will look for it, or on a lanyard to go with the person with FTD. Include demographic information, the specific FTD diagnosis, other chronic medical conditions, medications, information about their most recent hospitalizations, etc.
• Prepare for a potential hospital visit by packing a bag with essential items to help calm the person with FTD, such as a music player and headphones, tablet, books, cell phone, etc. Make sure electronic items are fully charged. FTD awareness cards could be helpful; be sure to include some if possible.
• Advance care directives or Provider Orders for Life-Sustaining Treatment (POLST) are especially important to communicate the person’s wishes about end-of-life care, especially in light of the potential for ventilator use in serious cases. Refer to Dr. Huey for more information about advance directives.
• Identify care team members and their contact information and if possible, arrange with a nurse or social worker to plan for a best time to communicate. If there are language- and/or communication-related symptoms, make sure the care team is aware and the person with FTD has tools to communicate (e.g. flashcards, a phone app, etc.)

Photo by Mick Haupt on Unsplash