The Long Goodbye –
Holding On While Letting Go in Dementia Care

This week, we’re pleased to offer a guest post from one of our own. Please welcome these insightful and important words from Breathing Spaces team member Tanya Kailath, Nurse Practitioner (Geriatrics and Palliative Care), Caregiver Educator, and Coach.

“Get out, get out, get out…you stupid b***!” she screams repeatedly, beyond physical exhaustion and vocal strain. She is a woman who has dementia, and she is not talking to another person, she is talking to an image perceived of in her mind.

One minute this image appears to be friendly even familiar and the next the image is a perpetrator, nemesis, potential killer. This woman is having what is referred to as a hallucination and they sometimes happen in people with dementia.

If you’re asking what is behind these hallucinations, why do they just happen and what can be done, you are not alone?

For the sake of this exploration, it is important to know the following terminology:

• Hallucination: an experience involving the apparent perception of something not present.
• Delusion: an idiosyncratic belief or impression that is firmly maintained despite being contradicted by what is generally accepted or rational argument.

Hallucinations are frightening, intrusive, often relentless and reactive past traumas. If you are watching someone you love and care about experience hallucinations, you may feel scared, helpless, and worried about their safety, well-being and what can happen next.

These hallucinations could be the emergence of repressed feelings, pain, shame, and fears that often start in early childhood. When a person with dementia loses the cortical space, cushion, buffer that blocks, represses these earlier moments then hallucinations have no bounds.

Dementia is a terminal diagnosis with the most common cause being Alzheimer’s, followed by Vascular and Lewy Body, frontal lobe, and Parkinson’s. Behaviors including hallucinations and paranoias are common in people with Dementia. In a traditional medical setting people exhibiting dementia with hallucinations are evaluated to look for acute causes that could be reversible and then often antipsychotics, sedatives or other medications would be prescribed.

If you are caring for a person living with dementia and they have not expressed, demonstrated a behavior, emotion that feels unsettling then this guide may be an important part of your preparedness. If the person you’re caring for is showing difficult emotions, thoughts, and reactions this guide may be helpful for you now.

LET’S GET STARTED:
How to interact and maintain safety:

• Be Safe
  • Observe body language and tone of voice; if your loved one appears agitated or paranoid, maintain a calm and non-threatening distance.
  • Remove potential hazards from the environment, such as sharp objects or unstable furniture.
  • Position yourself where you can exit easily if needed and avoid cornering the person.
  • If the hallucination involves fear (e.g., someone “trying to hurt them”), avoid touching or startling them without warning.
• Listen to the Words as Your Cues
  • Pay attention to emotional cues in their words. Are they scared, confused, angry, or curious?
  • Respond to the feeling, not just the content.
  • Use their words as a bridge: for example, if they say, “There’s a man in the hallway,” instead of denying it, say, “That sounds scary. Would you like me to check the hallway for you?”
  • Avoid brushing off what they say, even if it’s not real, it’s real to them at that moment.
• Do Not Argue or Correct
  • Gently redirect the conversation rather than confronting the hallucination. For example, “Let’s go have some tea in the kitchen” rather than “There’s no one in the living room.”
  • Validate the emotion, not the fact. Say things like, “I can see this is upsetting,” or “You seem worried—how can I help?”
  • Keep your tone soft, warm, and supportive, not authoritative or dismissive.
• Do Not Panic – Self-Soothe First
  • Take a deep breath before responding. Give yourself a beat to settle.
  • Remind yourself: This is the dementia talking, not the person.
  • Use grounding techniques if needed (touch something soft, take five slow breaths, remind yourself of your purpose in the moment).
  • Respond only after you’ve centered yourself—it’s okay to pause.
• Practice Self-Care Before You Enter the Environment
  • Before visiting or interacting, ask yourself: Am I rested? Fed? Calm? Even five minutes of intentional care can make a difference.
  • If possible, take short breaks throughout the day to decompress.
  • Have a support system in place: talk to a therapist, join a caregiver group, or confide in a friend.
  • Don’t feel guilty for needing time away. Preserving your well-being is essential to being a consistent and compassionate presence.

While the techniques outlined above are good steps to take, sometimes they’re not enough.

Let’s return to the woman from my opening paragraph, I worked with this patient and her family for months, and sadly, I can’t say it really got better. She screamed constantly in the center, and we tried everything to calm her: dark, light, lavender, reiki (helped temporarily), pain meds in case that was one of the causes, gave food, took her on walks, used essential oils, energy bands, and more.

Eventually I did need to prescribe and adjust anti-psychotics, and in the end she had hospice care. Due to system barriers and specific care setting restraints, I feel so sad to say hers was not an optimal ending.

The experience did inspire a lot of good work, protocols, and family communication and it is a constant reminder of why I love this work and how challenging and humbling it is at the same time.

If you found reading this blog about dementia and behaviors informative, useful to you and you would like to receive more personalized support, insight and guidance schedule a free consult at enlightenedaging.org.