At this time of year hauntings are not just in old homes. If you are living with an individual with dementia, you may well be faced with ghosts and imaginings that are convincingly real in presentation. Some forms of dementia are more likely to have delusions and hallucinations as symptoms. Your challenge as a caregiver is to validate rather than negate the presence of the man in the bathroom or the re-written biography that includes new players, new scenarios.
It is helpful to define both a delusion and a hallucination. Delusions in dementia world are false beliefs.1 When your 94 yr old mother states that she is waiting for her mother to come home, this qualifies as a delusion. What is critical for you to understand is that negating her belief will not work. In fact, to tell her that her mother died in 1999 will actually make things much worse.
Similarly, hallucinations are better left uncorrected. Hallucinations are incorrect sensory perceptions of objects or events, often visual or auditory. When the bumps in the laminate floor are called bugs, or the sound of a storm outside is called kids fighting—these are hallucinations.
Root causes of either delusions or hallucinations can include medical concerns like presence of a Urinary tract infection or a medication complication as well as social and environmental concerns. Questions to consider:
- has there been a new medication added recently?
- Have there been new people or changes in routine or environment?
- Are there visual changes, or lighting needs?
- Could it be sundowning, common to dementia, often at sundown and based on circadian rhythm2
Negative behaviors are often based in an unmet need that the individual can no longer express. This could be a physical need like thirst, hunger, rest, toilet or a social need like boredom, overstimulation. Take note of changes in the environment, routine, people in your loved one’s care circle. Often these trigger delusions or hallucinations. If you can determine the trigger, you will have
Delusions are often founded in the individual’s biography. Your loved one may be processing a piece of life story that has not yet been resolved. Because of the cognitive changes, the processing is garbled. There may well have been someone under her bed at one point, or under someone she love’s bed. Whether you are aware of the biographical roots or not, the delusion will not dissipate if you dispute it. In fact, she will only get more agitated and adamant. Instead you need to validate.
Naomi Feil, a pioneer in dementia care shared this strategy in her book Validation Breakthrough.3 Her daughter, Vicki de Klerk-Rubin, reinforces it in the book Validation Techniques for Dementia Care.4 To validate your loved one’s delusion seems counter-intuitive unless you consider it from her perspective. She very much believes there is a man following her in the hall. You know this is not true, and you want to clarify that.
But instead you offer her empathy, that must be very unsettling. And she feels heard, Yes unsettling? You aren’t kidding. As you ask her details about this man, you are affirming her. You are validating her reality. Which is comforting. She feels heard and her anxiety will decrease over time. Meanwhile you can re-direct your negative energy into the work of looking for the triggers. Done well, validation provides a win-win for you and your loved one.