Part 2: How to Respond When a Person with Dementia Asks if Someone Has Died

Note: This article is the second part of a three part series sharing the wisdom of Katya De Luisa, a dementia educator and author of “Journey through the Infinite Mind–the Science and Spirituality of Dementia.” Read part 1 and part 3 here.

What should you do when your loved one with dementia believes someone who has been dead for years is still alive? When they ask about them, what do you say? When they think they see them, should you tell them the person isn’t there and died years ago?

This article is part two of a two-part series sharing the wisdom of Katya De Luisa, a dementia educator, caregiver coach, and author of “Journey through the Infinite Mind–the Science and Spirituality of Dementia.” The first part, which was published a week ago on our blog, was about one facet of De Luisa’s writings — communication through art — where she accomplished a nearly impossible feat of getting someone who is nonverbal to communicate with words to a loved one. Read it here.

In her writings, Katya also explores the topic of whether you should correct someone with dementia about a loved one who has passed away when he or she feels like they are still alive. It’s discussed in more detail in DEMENTIA INSIDE OUT Series #8 “I SEE DEAD PEOPLE” by Katya De Luisa. I will provide some of the highlights below.

Do We Remind a Loved One with Dementia That Someone has Died?

Many people with dementia become unaware that someone they love has died and will ask about them or hallucinate about them. As an example, on the morning after writer Paula Scott’s mother died, she and her siblings sat together in the kitchen in shock. They heard their father, who is in the middle stages of dementia, come down the steps dressed in a suit looking sad, ready to go to the funeral home to make arrangements. At that point, he would often forget appointments or what he’d just said, but he remembered this as if he were a grief-stricken version of his usual self before he was diagnosed.

The next morning, the scene was repeated. Grieving siblings whispered funeral plans over breakfast and heard their father coming down the steps. “Good morning,” he said in a bright voice. “Are you ready to go see Mother at the hospital?” He went on to tell them that she was doing well and sends her love to them. Paula and her siblings were at a loss for what to do or say but ended up explaining that she died a couple days ago. He burst into tears, stricken anew, exclaiming, “Why didn’t anybody tell me? I didn’t get to say goodbye!”

Paula, in the example, describes how her father was able to recall the next morning that his wife had died because the shock of this seismic event was so great, but the morning after that, in less than 48 hours, the fact of her death grew more easily forgotten. In this example, after the funeral, Paula’s dad never mentioned her mother (to whom he was happily married for 67 years) again. This isn’t always the case though. Some people with dementia bring up those who died years later and think or hallucinate that they are still alive.

Why Someone with Dementia May Remember a Deceased Loved One as Still Alive

People with dementia may express an interest in talking to someone who died years ago, such as a parent, spouse, or sibling. They may be uncertain about the death of a close family member: “Did my brother William die?” Or they may be oblivious — for example, talking about inviting his lifelong friend, Roy, and Roy’s wife, Amy, over to dinner, when Amy or Roy (or both) died years ago. Many caregivers or family will feel conflicted about whether they should tell them the person has died; after all, they will forget about it soon after the conversation and will need to be told the sad news and feel the sad emotions once again when they bring up the person another time.

Katya De Luisa makes a case for why it is NOT a good idea to tell someone their loved one who they are asking about is dead. According to Katya, “(i)magine how the shock of hearing someone you loved died affects the person, not just in the moment but also how their hormonal balance and emotional well-being are affected long term.”

She explains the science of it:

  • “Dementia affects short-term memory, and yes, they will forget what you said. However, the shock of finding out someone loved died triggers strong emotions leading to a cascade of physiological changes that don’t immediately dissipate after they have forgotten.”
  • “Our brain creates activated neurotransmitters and hormones when we are emotionally triggered. Our primary emotional triggers are happiness, sadness, or stress.”
  • “Dopamine, serotonin, and norepinephrine create feel-good emotions, and when in love, we get flooded with endorphin hormones. Lowered levels of these neurotransmitters foster sadness, leading to depression, chronic anxiety, and stress. Stress releases adrenaline, the fight-or-flight response. Also, cortisol increases blood sugars (glucose) and can lead to mood swings. The release of these ‘chemicals’ is automatic and happens without conscious awareness.”
  • “People with dementia are commonly experiencing chronic anxiety and fear, which leads to a continuous excess of adrenaline hormones; in fight or flight mode. This could be a significant factor in why they get upset or angry so quickly. Lowered levels of feel-good transmitters, commonly result in depression.”
  • “Even though they will mentally forget not long after you tell them, the physical neurochemicals and hormones will continue to circulate and affect them for some time after.”

Keeping a person with dementia happy or peaceful keeps up levels of the neurochemicals that prevent depression and the emotional imbalances they commonly experience. Telling them anything as upsetting as the death of someone they love, in Katya’s opinion, does not have any positive benefits.

What Do You Say Instead?

If they ask, it’s best to say they are at the store or work and will be back later. If they are hallucinating the person, go along with it. Because if you don’t, they will grieve their loss as deeply as the first time they were told, every time.

Here are some things you can say or do:

  • Turn the fact of the death into an opportunity for fond reminiscing: “Wasn’t she the sweetest person ever?” “I’ll always miss her piano playing. I remember the time she gave that concert at church….”
  • Don’t make a big deal about insisting the person absorb the reality. There’s no need to drive him to a cemetery to “prove” the death or show an obituary, for example. Logic is ineffective. Some people will ask follow-up questions, and others will be accepting and not talk about it further.
  • Consider distraction in some situations. That might be kindest if, for example, the person becomes fixated on contacting some long-gone relative or wants to buy things for her and can’t seem to process the reality of a death.
  • Ultimately, decide what’s best in your particular case. Some families find it easier to tell a little white lie when the questioning is persistent or the person becomes quite agitated every time the topic comes up. It’s possible to gloss over the fact, especially as dementia advances. When one man kept asking about his long-dead wife, his daughter and son would put him off by saying, “She’s running late.” Or, “She’s still on that trip to England” (where she traveled to visit her cousins). Such comments would pacify him in the moment, and then he’d forget about it. This may not be the best strategy, of course, if your loved one fixates on this falsehood and waits around all day in disappointment.

What if a Loved One of Someone with Dementia Dies in the Present?

Families often also wonder whether to inform someone with dementia of the death of a loved one in the first place. The rationale people give for not saying anything is usually to avoid causing unnecessary distress. Some caregivers say they avoid sharing sad news because they don’t want to be asked about it (and have to talk about it or revisit their own grief) over and over. Others feel it is necessary to tell the person. The best thing you can do is to take what is stated above into consideration, and use your best judgement for your situation.

Compassionate Fibbing and Dementia

Last year in an article, I explored the topic of compassionate fibbing and dementia. Barton Bernstein and Larissa MacFarquhar made compelling arguments about why you shouldn’t feel guilty about telling white lies to loved ones with more advanced stages of dementia. Read the article here.

Planning for a Loved One with Dementia

Do you have a loved one who suffers from Alzheimer’s or another form of dementia? Persons with dementia and their families face special legal and financial needs. If your family is facing a diagnosis of Alzheimer’s disease or any other type of dementia, please call us to make an appointment for an initial consultation:

Medicaid Planning Attorney Fairfax, VA: 703-691-1888
Medicaid Planning Attorney Fredericksburg, VA: 540-479-1435
Medicaid Planning Attorney Rockville, MD: 301-519-8041
Medicaid Planning Attorney Washington, DC: 202-587-2797

NOTE: This article is part 2 of a 3-part series sharing the wisdom of Katya De Luisa, a dementia educator and author of “Journey through the Infinite Mind–the Science and Spirituality of Dementia.” Read part 1 and part 3 here.

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.