Sometimes, it’s really obvious something is off and requires intervention. Other times, we notice things are unusual, but we aren’t sure if we should be alarmed and do something, or chill out and let it go. Families are understandably concerned about a wide variety of changes they see when it comes to a person they’ve loved and known for years….A person who now just doesn’t quite seem like him- or herself anymore.
Last week, I said “Is this normal?” is, hands down, the #1 most common question I’m asked. This week we take a look at the invariable follow-up question: “Okay, but what about this?!”
MORE Signs of Changes in Usual Behavior
I know I can sound like a broken record when I hop on my soapbox…but this is important, so I want to make sure you know it:
- “Behavior” is just another word for communication. It may be communication we don’t particularly enjoy, but it’s still communication.
- One of the worst things we can do is assume that any behavior is “just” dementia and not attempt to figure out the underlying cause.
As family, we often aren’t sure when or if we need to reach out for professional help. The following is a list of behavioral changes–change in usual behavior–indicating a need for help.
Sign: Sudden onset of depression
Why it’s a big deal: Keep in mind, dementia affects more than just memory loss; it’s an attack on the whole brain. That can include changes in brain chemistry. Depression is highly correlated with dementia, and it’s treatable.
That said, a good general rule of thumb is this: a sudden onset of anything is a sign something is wrong.
Looking at signs of depression, it could be a variety of things: a new medication; a medication change; a change in medication dosage; stopping smoking (really!); a change in diet; lack of/poor sleep quality; change in living situation; and on and on it goes.
It’s important to never assume it’s “just” dementia. Instead, make a doctor appointment. (See How To Get Someone with Dementia To Go To The Doctor.)
When to intervene: As soon as possible. Depression feels awful!
Intervention quick tip: Saying things like, “This too shall pass,” or, “Everything’s fine, just snap out of it” isn’t helpful. Instead, listen empathetically. Validate your person’s feelings. Then (and only then), offer reassurance.
It might sound something like this: “Thank you for telling me. I can see why you’re feeling this way. I wish I could wave a magic wand and make you feel better. But what I can do is make sure you know I love you and I won’t let you go through this alone. Deal?”
Sign: Delusions/hallucinations
Why it’s a big deal: Both hallucinations and delusions can scare the beejeezus out of people experiencing them. Although often lumped into the same category, delusions and hallucinations aren’t the same thing. A delusion is a fixed belief in the absence of evidence; a hallucination is the perception of something that isn’t present. Hallucinations can be visual, auditory, and/or olfactory.
When to intervene: If it’s a problem for the person experiencing them. If it’s not a problem for your person, don’t sweat it. If it is a problem, seek medical attention. An underlying infection may be the cause, or a visual or hearing problem.
Intervention quick tip: See Dementia, Confabulation, Conflation, and The Truth for a more detailed discussion, as well as a link to A Dementia Sherpa Guide: How to Handle High Anxiety, Hallucinations, & Delusions…without Drugs!
Important note: People with Dementia with Lewy Bodies or Parkinson’s Disease with Dementia are likely to experience delusions and hallucinations at some point. Antipsychotics are contraindicated for all people living with dementia, but even one dose can be lethal for people with DLB or PDD.
Sign: Suddenly saying “NO” to social activities that were formerly enjoyed
Why it’s a big deal: This is a primary coping/defense mechanism at about stage 4 (mild dementia). People start withdrawing from activities and social situations that they used to enjoy. The problem is threefold: social isolation can cause feelings of depression and expedited deterioration of language abilities; feelings of depression and deterioration of language abilities can cause more social isolation.
When to intervene: As soon as you notice this is a pattern.
Intervention quick tip: You get to be the hero in this situation (yay!). Go with your person to events, stick with them, and give them social cues: “Looks like Barbara and Larry are heading our way, Mom. I bet we’re going to hear all about their trip to Sedona.” Doesn’t matter if your mom’s been going to church with Barbara and Larry for the last 40 years. Give her the social cue anyway.
The situation will likely go sideways fairly quickly if you leave your person’s side or there are too many people (read: too much going on at once makes it hard to focus, concentrate, track). If your person wants to leave after only a half hour, so what? You’ve already achieved victory. Roll with it, graciously.
Sign: Compulsive behavior such as gambling, overeating, sexual acting out
Why it’s a big deal: These types of activities, lumped together, are still often called a “mid-life crisis.” But they can also be signs of frontotemporal dementia. To be clear, we’re not talking an evening excursion to a nearby casino, having dessert every night, or bluntly asking for sexual contact during your favorite tv show.
Instead, it’s more likely to look like blowing through several thousand dollars in a relatively short period of time, overeating to the point of becoming sick and/or clothes no longer fitting with a few weeks, or approaching others outside your relationship for sexual contact.
When to intervene: Sooner rather than later. Marriages have ended, savings have been blown through, jobs have been lost, and people have ended up in the drunk tank at jail and/or the psych ward in a hospital. Do whatever it takes to get your person to a neuropsychology eval. Not a psych eval, not a neurology appointment–a neuropsychology eval.
Intervention quick tip: Reason and logic won’t work, so don’t bother unless you’re really itching for a fight. On the other hand, another hallmark of FTD is a shortened attention span, so use that to your advantage. Other ways to intervene include limiting access to bank accounts, replacing debit and credit cards with a prepaid card, and installing child-safety locks on cabinets and the refrigerator if necessary.
Next week, we’ll look at physical changes that can indicate it’s time to intervene.
Depending on the type of dementia your person has, it's a 2-20 year process. That's a long time for trial and error. If you don't already have a strategy, it's time to get one. I'll help you; just schedule a complimentary call with me.Need Expert Help?
Christy Turner is a speaker and consultant, the founder of DementiaSherpa.com, and creator of the program What To Do When Your Parent or Partner Has Dementia. She’s a regular contributor on The Alzheimer’s Podcast with her segments “Guiding You Through Rough Terrain with The Dementia Sherpa.” Christy has enjoyed the privilege of working with over 1,200 people living with dementia and their families.