Hallucinations, Delusions and Misperceptions
Sometimes dementia can cause a person to experience a different reality to our own, this may include seeing, hearing, tasting or smelling something that isn’t present (hallucinations), inability to recognise objects, people, tastes or sounds (misperception) and/or having a fixed belief that is not true (delusions). Please note that not everyone experiences these states.
Hallucinations are more common in Lewy body dementia (LBD) and Parkinson’s disease dementia, (although they can occur in Alzheimer’s disease and other types of dementia also). The person may see animals or people that aren’t there and this may happen only occasionally or more frequently, sometimes daily.
Your loved one’s reality is different to your own at this moment in time and they will have a fixed belief that what they are experiencing is real. This is usually caused by damage to the area of the brain affected by the dementia and/or changes in their neurochemicals in the brain. Sometimes characters from television may appear very real and appear to be in the room with your loved one. It may be difficult for them to work out what is real and what is virtual from televisions and screens. This may or may not frighten your loved one, but if it does, I would suggest turning off the television and reducing the sensory overload (voices from the radio may also apply here). If the person doesn’t seem concerned then it is best to avoid talking about it or confronting them.
What do I do if I think the person is having an hallucination?
If your loved one appears to be experiencing hallucinations, then the first thing to do would be to ask yourself, are they upset by this? Is their behaviour being affected by them? Are they at risk? Are they frightened? Sometimes, people may not be concerned by them, but if they are, try and stay calm, breathe slowly and try and feel their emotion. Finding the Light in Dementia, a Guide for Families, Friends and Caregivers offers tips and approaches that may help.
What may seem as a hallucination may possibly be more of a misperception, such as mistaking one object for another or mistaking who they are seeing. Sometimes your loved one may not recognise their older self in the mirror and this can be quite frightening. If a reflection in a mirror causes distress, cover the mirror or get someone to help you attach a blind to it, so that you are still able to use it, but that it is not visible to cause your loved one distress.
If they have poor eyesight, make sure they have an up to date appointment with an optician (and a hearing test also) for a check-up. Maybe suggest moving into a different room, declutter the space and change the lighting as sometimes shadows, dark rooms and patterns can cause misperceptions.
Sometimes your loved one may communicate an idea that is false which may appear bizarre and may sometimes be paranoid such as believing that family members are stealing from them. This is a fixed belief and can be very upsetting for family members/friends. Try not to take this personally, avoid challenging the belief or trying to reason, because what is felt is a true reality for your loved one. Once again offer reassurance and try to distract from the delusion, You could say something like “shall we go and find your purse/billfold/wallet together?” Using the words “shall we” and “together” helps the person feel that you are working with them and not against.
People can be mistaken for other members of the family such as a son may be perceived as his father. There may be times when you may want to attempt to bring your loved one back to your reality and sometimes earlier on in the condition it may be possible. But be aware it is best to avoid confrontation and upsetting them. As the condition progresses it may be better to let it go and not correct them.
Try and stay in the moment, your loved one needs to feel that they are safe and cared for. Following these approaches, however difficult and upsetting it can be, will help you too. If you struggle with this, I would suggest talking to your doctor about getting some counselling to help you and to point you in the direction of local support groups and dementia charities. See friends and family and try not to isolate yourself. If you are getting good support, you are in a better position to care for your loved one and yourself too.
If these hallucinations and/or delusions continue over time or if they involve a number of senses it is important that you consult your doctor as they may also be caused by other physical complaints such as infections, pain, delirium or even side effects to some medication.
For more help and support read Chapter 10 Altered States: Hallucinations, Delusions and Misperceptions, Try new approaches to avoid distress in Finding the Light in Dementia, a Guide for Families, Friends and Caregivers