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Planning Ahead to Avoid or Manage Facility Transfers for Frontotemporal and Lewy Body Dementia

This guide helps family caregivers of loved ones with frontotemporal or Lewy body dementia plan ahead to reduce the likelihood of emergency facility transfers and make any necessary moves smoother. Transfers often happen in crisis, but with proactive steps you can maintain more control and reduce trauma. You'll find concrete strategies for communication, documentation, and environment setup to ease transitions and prevent common pitfalls.

Key points

  • Start advance care planning early to document your loved one's wishes and avoid unwanted hospital transfers.
  • Create a care notebook and emergency 'go bag' to ensure vital information is always available during transitions.
  • Research facilities ahead of time, focusing on those with experience in FTD and LBD, and use a senior placement agency.
  • Use therapeutic fibbing to reduce resistance to a move, responding to emotions rather than arguing. Stop immediately if your loved one becomes more distressed or sees through the fib.
  • Personalize the plan for the specific dementia type, stage, and caregiver role to address unique challenges.
  • Communicate regularly with facility staff and clinicians, and update the plan as the disease progresses.

Why Facility Transfers Happen and Why Planning Matters

Most facility transfers for people with dementia happen in emergency situations, not as part of a calm plan. A sudden fall, wandering, or a rapid change in behavior often triggers a 911 call and a move to a hospital or new facility. This is stressful for everyone, and the person with dementia may experience 'transfer trauma'—confusion, fear, and agitation from being in an unfamiliar place. Planning ahead helps you avoid these crises by anticipating needs and having a clear path forward.

The Unique Challenges of Frontotemporal and Lewy Body Dementia

Frontotemporal dementia (FTD) often affects behavior and personality first, making transitions especially hard because the person may not understand why they need to move and may react with anger or resistance. Lewy body dementia (LBD) involves fluctuating cognition, visual hallucinations, and movement issues, so a change in environment can trigger severe confusion or falls. Both conditions require careful communication and environment setup to minimize distress. Planning ahead means you can choose a facility that understands these specific needs and has staff trained in managing behavioral symptoms.

The Role of Advance Care Planning and Communication

Advance care planning is crucial for avoiding unwanted hospitalizations and transfers. This involves discussing goals of care with your loved one early, when they can still express wishes, and documenting them in advance directives. For example, you might agree that if breathing becomes difficult, comfort care at the facility is preferred over a hospital stay with a breathing tube. These decisions should be written down and shared with the facility staff, doctors, and emergency responders. Good communication between you, the facility, and healthcare providers ensures everyone knows the plan and can act on it, reducing the chance of a crisis transfer.

General caregiving information, not medical advice. Check medications and major care changes with your clinician.

Step-by-step

  1. Begin advance care planning early: have honest conversations about their wishes for hospitalization, resuscitation, and life-sustaining treatments while they can still express preferences; document these in an advance directive and keep copies at home, in the go bag, and with any facility.

  2. Create a care notebook compiling medications, diagnoses, doctor contacts, allergies, behavioral triggers, calming strategies, and emergency contacts; keep one copy on the refrigerator for first responders and share it with the facility.

  3. Research and visit memory care facilities before you need one; ask specifically about staff training in FTD and LBD behavioral symptoms and hallucination protocols, and ask about waiting lists so you are not choosing under pressure.

  4. Establish a communication protocol with the facility: designate a primary family contact, share your loved one's care plan and triggers, and request that staff call you before initiating any transfer.

  5. When a move is necessary, bring familiar items (e.g., photos, a favorite chair, a quilt) and arrange furniture to mirror the previous layout to reduce disorientation.

  6. If your loved one refuses a move, use a calm, simple reframe such as 'The doctor wants you to stay here for a few days to help with your sleep'; stop immediately if the fib increases anxiety or is seen through.

  7. Prepare an emergency go bag: pack a week's supply of medications, a change of clothes, comfort items, copies of advance directives, and the care notebook for quick departure if a transfer becomes unavoidable.

  8. Review the plan every few months: revisit medications, behavioral triggers, advance directives, and facility fit, since needs in FTD and LBD can shift quickly.

What not to do

  • Don't wait for a crisis to start planning—research facilities, discuss wishes, and prepare documents before a fall or sudden behavioral change forces a rushed decision.

  • Don't argue or try to reason with your loved one about the move; instead, acknowledge their feelings with empathy and use a gentle reframe to reduce conflict.

  • Don't neglect to share your loved one's history with the facility—without knowing triggers and effective approaches, staff may use tactics that escalate agitation.

  • Don't assume any facility will automatically understand FTD or LBD—ask specifically about staff training in behavioral symptoms, hallucination management, and flexible routines, and observe staff interaction with current residents.

  • Don't overlook your own needs as a caregiver; decide in advance who will handle medical decisions, finances, and daily visits, and arrange respite so you are not overwhelmed during a transition.

Practical tools

  • State-Specific Advance Directive Form

    Download your state's form from the American Bar Association or AARP, complete it with your loved one's wishes (e.g., comfort care only, no intubation), have it witnessed or notarized as required, and keep copies at home, in the go bag, and with the facility; consider having an elder law attorney review it.

  • Care Notebook Template

    Create sections for medications (name, dose, timing), diagnoses, doctor contacts, allergies, behavioral triggers, calming strategies, and emergency contacts; keep a copy on the refrigerator for first responders and share it with facility staff.

  • Therapeutic Fibbing Scripts

    Prepare 3–5 calm, confident phrases for moments of resistance, e.g., 'The doctor wants you to stay here for a few days to help with your sleep'; if the fib increases anxiety or is challenged, stop and shift to empathetic validation or gentle distraction.

  • Emergency Go Bag

    Pack a small, ready-to-grab bag with a 7-day supply of medications, a change of comfortable clothes, personal hygiene items, a favorite comfort object, copies of advance directives, and the care notebook; store it in a consistent, easy-to-find spot.

  • LBD Fluctuation and Symptom Log

    Track daily cognition, mobility, hallucinations, and medication response in a simple weekly chart to establish baseline; this helps distinguish normal LBD fluctuations from acute changes, reducing unnecessary emergency transfers triggered by typical symptoms.

How can caregivers plan ahead while leaving room for the unexpected?

Start advance care planning early by writing down your loved one's values and preferences for care, then update these documents every six months or after any major health change. This gives you a flexible roadmap that can adapt to unexpected twists like sudden falls or infections.

How can I document my health care preferences if I become incapacitated?

Complete a healthcare power of attorney and living will with your lawyer or through a free tool like Five Wishes, then put a signed copy in your care notebook and emergency 'go bag'. This ensures your wishes are clear and accessible even if you can't speak for yourself.

Discuss with your clinician

Ask your clinician about a 'do not hospitalize' order if your loved one is in late-stage dementia and you want to avoid emergency transfers for comfort care only.

Discuss with the doctor whether a feeding tube or IV fluids should be avoided in advanced dementia, as these often require a hospital stay and may not improve quality of life.

Ask about medication adjustments for behavioral symptoms (e.g., antipsychotics for hallucinations in LBD) to reduce the risk of a crisis that triggers a transfer.

Inquire about a palliative care consult to create a comprehensive plan for managing pain, agitation, and other symptoms at the facility, reducing the need for hospital visits.

Discuss the risks and benefits of a 'do not resuscitate' (DNR) order, especially if your loved one has a condition like pulmonary hypertension that makes survival after resuscitation unlikely.

Ask your doctor: 'What are the safest medication options for managing agitation or hallucinations in my loved one's specific dementia type?'

Ask your doctor: 'What is the appropriate dosing range for any medications we might use, and what signs should I watch for that indicate a need to stop or adjust?'

Ask your doctor: 'Are there any legal steps, like a specific advance directive form, that you recommend for our state to ensure our wishes are followed?'

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