Dementia-related behaviors like delusions and hallucinations can be difficult to accept and manage in a loved one. Especially when your elderly parent begins seeing or talking to dead relatives, which can be a common occurrence as dementia progresses. Dementia patients asking about dead relatives is a behavior that caregivers should prepare themselves for. And the emotional implications of these situations are often intense for patients and caregivers alike.
As a caregiver, understanding these situations and learning how to respond can help you stay in control of your own emotions through these difficult times.
Why are dementia patients seeing dead people?
Two distressing symptoms that people in the middle and later stages of dementia may experience are hallucinations (false perceptions) and delusions (false beliefs).
Hallucinations: Seeing loved ones who aren’t there
Hallucinations are more common in certain types of dementia. For instance, visual hallucinations occur in up to 80% of seniors with Lewy body dementia early in the disease. Such hallucinations are also present in about 13.4% of Alzheimer’s patients, usually in the later stages. Parkinson’s disease patients are also prone to hallucinatory symptoms.
Sometimes hallucination symptoms manifest as seeing and talking to people who died long ago. Advanced damage to the brain in a person with dementia may cause such hallucinations. Your loved one may feel a deceased one’s presence and have full conversations with them, even though they’re not there.
Dementia caregivers are understandably disturbed by these incidents, but they’re often harmless. In fact, people living with dementia may even find these visual and/or auditory hallucinations of old friends or family members comforting. It’s usually more unnerving to the caregiver, and it’s up to the caregiver to decide how to deal with these hallucinations.
Delusions: Not remembering when loved ones have passed away
Due to memory loss, your loved one with dementia may simply not remember that a person they love has died. They may also vehemently deny this fact despite being presented with evidence of the person’s death, such as an obituary, sympathy cards, or a visit to their final resting place.
As dementia progresses, you and your loved one must learn to live in the moment. It’s important to understand that their experiences are very real to them, even if they do not reflect reality.
Seeing someone with memory loss call out for a deceased parent, friend, or spouse can be heartbreaking. An effective way to approach this situation is to consider who your loved one is calling out for and why. Then offer reassurance in the most calming and comforting way you can. Tuning in to your loved one’s underlying needs can help you respond to these situations.
While hallucinations and delusions are common in many kinds of dementia and other psychiatric disorders, these symptoms can be caused by other underlying issues. Comforting your loved one is important, but you should also track new or worsening psychological symptoms and report them to their doctor.
Monitor new and worsening symptoms
Establishing what’s normal for a loved one’s mental health and behavior is very useful for quickly identifying the need for changes to their care plan. This is especially true when it comes to caring for seniors with any form of dementia.
Certain environmental factors, like dehydration, malnutrition, lack of sleep, reactions to medication, and even infections, can contribute to hallucinations and delusions. Because hallucinations may have multiple causes, it’s important to carefully document symptoms and discuss them with a doctor as soon as possible.
How to respond when a dementia patient is asking about dead relatives
No matter what’s causing their symptoms, how you respond to your loved one depends on many things, including how you’re feeling as a caregiver.
Dementia care specialist and caregiver therapist Jamie Huysman, a licensed clinical social worker who holds a doctorate in psychology, emphasizes the importance of caregiver well-being. He recommends taking into account your own mental and emotional state when deciding how to respond when your loved one brings up deceased relatives. Below are just a few strategies to help you cope with this behavior. You may try different tactics depending on how you and your loved one feel on a given day.
Research on reality orientation has produced mixed results. This technique involves telling your loved one the truth and doing your best to orient them in the current reality. The approach is most effective for those with mild to moderate memory loss, as noted in the American Journal of Alzheimer’s Disease and Other Dementias.
Examples of reality orientation include things like frequently referring to people using their correct names, or reminding your loved one of the time of day. When someone with dementia keeps asking about a deceased relative, this means reminding them that the person has died.
Be prepared, though. This response may cause them to grieve this loss all over again, as if they were hearing it for the first time. It’s typically not the best response if you wish to holistically comfort your loved one.
This strategy is best employed in instances where your loved one is upset because they’re worried about the deceased person’s well-being. In these cases, it may give them some relief to know that they don’t need to worry anymore. You can assure them that their late loved one is at peace.
This technique involves validating your loved one’s feelings and stepping into their world. Validation orientation can lead to a reassuring experience for those with dementia, especially if they’re more comforted by these delusions and hallucinations than not. For example, if your loved one asks where their deceased spouse is, you can simply say that you’re not sure.
How you respond is entirely up to you and your comfort level. If your loved one keeps asking questions about the person who passed away, and you don’t want to necessarily lie to them, you can talk around the topic. For example, try simply reminiscing with your loved one about the time they spent with their deceased friend or relative. Bring up a joyful memory and talk about the way this person made you and your loved one feel.
This type of orientation focuses on the positive side of things. It can orient your loved one in the uplifting energy that the person they’re mourning left behind, instead of the loss.
Redirection or distraction
Some days you may not be up to engaging in these difficult discussions. If you’re unable to calm your loved one with validation, try engaging them in another activity. Redirect them toward something that they typically enjoy, like spending time in a garden, doing a puzzle, or listening to music together.
A change in environment can help shift their mood, even if that means simply moving to a different room in the house or outdoors.
Cognitive behavioral therapy (CBT)
If your loved one struggles with depression or anxiety surrounding the loss of a family member, you may consider cognitive behavioral therapy. Working with a professional, your loved one can identify how their thoughts are linked to their emotions. However, cognitive behavioral therapy is most effective in the earlier stages of memory loss, according to the Alzheimer’s Society.
Next steps and care solutions
Having the same conversations over and over isn’t easy, especially when it involves the loss of someone you may have been close to. Remember that there’s no one right answer in dementia care. You may need to try several techniques to find out what is most effective for you and your loved one. The best way to support them is by remaining calm and finding some time to care for yourself, too.
As your loved one’s dementia progresses, you may want to explore in-home care to give yourself time away from your caregiving duties. Over time, symptoms like hallucinations and delusions may become more difficult to manage at home. Memory care communities offer a secure, engaging environment for seniors with dementia. Considering all care options early on and planning ahead can give you peace of mind and make it easier to support your loved one now and as their needs increase.
Alzheimer’s and Hallucinations, Delusions, and Paranoia (https://www.nia.nih.gov/health/alzheimers-and-hallucinations-delusions-and-paranoia)
Responding when Someone with Dementia Wants Her Mom or Dad: Understanding Why Alzheimer’s Causes Her to Call Out for a Parent (https://www.verywellhealth.com/responding-to-dementia-patients-97630)
Reality Orientation for Dementia: A Review of the Evidence of Effectiveness from Randomized Controlled Trials (https://academic.oup.com/gerontologist/article/40/2/206/554982)
Using Reality Orientation in Alzheimer’s and Dementia (https://www.verywellhealth.com/treating-alzheimers-disease-with-reality-orientation-98682)
Validation therapy for dementia (https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001394/full)
Treatments for Behavior (https://www.alz.org/alzheimers-dementia/treatments/treatments-for-behavior)
Cognitive behavioral therapy (CBT) for dementia (https://www.alzheimers.org.uk/Care-and-cure-magazine/summer-18/cognitive-behavioural-therapy-cbt-dementia)