Dementia can cause people to say and do some pretty odd things. Family caregivers may be caught off guard at first, but as they learn about their loved one’s condition, it should become easier to adapt to these new quirks. However, people who aren’t providing care for someone with dementia typically aren’t familiar with the unusual symptoms that can develop. When elders living with cognitive decline (and their caregivers) venture out to shop, attend doctor’s appointments, socialize, and live their lives, embarrassing and sometimes inappropriate scenarios may ensue.
A caregiver's experience
Whether your loved one has had dementia for years, or you’re on the lookout for early signs of dementia, inappropriate behavior should be on your radar. Handling dementia-related behavior changes while out in public can be a harrowing experience at times. I can recall one instance when I was sitting with my neighbor, Joe, at the local clinic, waiting for some medical tests he required. Joe saw a man pulling an oxygen tank behind him and excitedly yelled, “Look! He’s got a golf cart!”
While an outsider would have been confused by his exclamation, it made sense enough to me. Joe had loved playing golf as a younger man, his sight was poor, and his word-finding abilities had declined over the years. He “saw” and announced what he knew: a golf cart. The man walking by was embarrassed. I simply smiled at him and redirected Joe, asking him to tell me his best golfing stories.
This incident was a little awkward, but it wasn’t nearly as mortifying as some of the others I’ve witnessed. Several of my loved ones developed various types of dementia as they aged, and I visited them daily in many different settings over many years. Caring for all these people presented me with a valuable window into dementia behaviors, some of which I’d have trouble describing in a polite manner.
Dementia caregivers may find themselves in one or all of the following common scenarios at some point. Anticipating these uncomfortable moments and knowing how to handle them before they happen is your best chance for quickly and gracefully defusing them.
How to handle dementia and racism
While some of the inappropriate things that come out of dementia patients’ mouths tend to be off-the-wall or even comical, other comments are deeply hurtful to those around them. These remarks are the product of interacting with the world as usual but without any social filters. A senior with cognitive impairment may comment on a person’s attractiveness, weight, clothing, accent, or even race. The first few items on this list can come across as downright rude, but offensive remarks about race or ethnicity cross a very serious line and must be addressed swiftly and sensibly by caregivers.
This is often an issue with elder care providers like in-home care agencies, adult day care centers, and senior living communities where the comprehensive staff is comprised of people from diverse backgrounds. A dementia patient may comment on a person’s race or ethnicity or even use racial slurs. While we dementia caregivers quickly learn to laugh off an odd statement or redirect repeated questions, these kind of remarks cannot be swept under the rug.
The truth is that many of our elders grew up in much less diverse communities than we have today. For example, in the Great Plains area where I grew up, most people were of Scandinavian or Germanic extraction, so it was largely a “white bread” society. My feeling is that most elders aren’t racists; they simply aren’t used to interacting with people from different backgrounds. To make matters worse, dementia can cause an elder to lose their filter and become fearful, angry, or agitated when confronted by a person or situation they’re not completely comfortable with. This is the perfect storm for a derogatory quip and hurt feelings.
Responding to racism in various scenarios
Elders are bound to interact with people who are Native American, Hispanic, Asian, African American, and new immigrants from any number of countries, especially in a diversely staffed elder care setting. I was fortunate that both my parents greeted all their caregivers with open arms. However, I saw and heard many elders using racially charged language that was very disrespectful, to say the least. Again, it doesn’t necessarily mean these people were racist, although, of course, some are. Many have simply lost their short-term memory and whatever inhibitions they may have once had. So, when they see someone who is different from them, they blurt out names or stereotypes that they heard as youths, thus embarrassing everyone involved.
In a scenario like this, many caregivers would immediately want to rebuke their elders for being so insensitive, but this is rarely effective. As the popular mantra goes, there’s no reasoning with dementia. Those in the moderate and severe stages typically are unable to engage in conversations about respect or political correctness. Even if they are, they’ll likely forget the discussion shortly afterward.
Instead, the best option is to quickly put an end to their abrasive comments, often through acknowledgement and redirection. The next step is to ensure that the person they were talking or referring to understands this elder has a condition that affects their judgement and behavior.
For example, if your loved one calls one of their professional caregivers a foreigner (or worse yet uses a racial epithet), the best course of action is to acknowledge what they have said and switch to a different topic. If their remark isn’t addressed, it may cause them to repeat or expound upon the initial idea. This doesn’t mean that you agree with them or condone their behavior; this is simply a step in the redirection process.
Try something like, “Yes, isn’t it exciting to see so many people from different walks of life working together to help each other?” If more grumbling or even outrage is shown, such as refusing to let the caregiver provide assistance, we must remember that this probably isn’t their first time encountering such pushback. Opening up conversation with the professional caregiver might offer some tips as to how to comfortably defuse the situation.
When I had something similar happen with an elderly friend of mine, I apologized to the employee and stuck around to chat with them both for a while. Sometimes setting an example of healthy, respectful interaction can help build trust and comfort among everyone involved. My friend eventually grew more relaxed around the new caregiver and allowed her to do her job. The happy conclusion was that this elder and caregiver eventually bonded and became good friends.
In an ideal world, nobody would have to endure this kind of language, especially at work, but elder care professionals should understand how dementia affects the mind. Many in this industry handle these scenarios with grace. Sometimes family caregivers can give fair warning that this may be an issue. In other cases, these offensive outbursts come out of nowhere from seniors who had never expressed such sentiments before. This is just one of the many shocking symptoms that dementia can present.
Advice from other dementia caregivers
Members of AgingCare’s Caregiver Forum have experienced very similar situations with their own loved ones. Inappropriate outbursts and uncharacteristic remarks about other people’s appearances are, sadly, very common behaviors in older adults with Alzheimer’s and other types of dementia. Perhaps what’s even sadder is the emotional impact these shocking behaviors can have on caretakers.
This experience was shared by a forum member whose dad has been in assisted living for six months:
“I’m noticing personality changes in him. He was in the army and was a barber for many years. He owned his own shop. He loved to interact with people. He was diverse, caring, open-minded, social, and very recognized in the industry. People always had good things to say about him. I never imagined how dementia would just completely alter him. Our relationship is changing and it makes me sad and angry.”
Another member wrote, “Your parent as you knew them is there somewhere, but also is this other person who’s harder to deal with. Often in life, we discover that our loved ones have feet of clay.”
It can be jarring to discover a major character flaw such as racism in someone you once held in high regards. Other members of the Caregiver Forum shared that they’ve had very similar experiences. Their advice? Remind yourself that your loved one has a medical condition and their brain has physically changed. The culprit isn’t them, it’s their dementia.
How to handle a dementia patient’s thrifty behavior
Many elders were strongly influenced by the Great Depression and pride themselves on their frugality and resourcefulness. Furthermore, most seniors are living on a limited income and worry about having enough money to see them through retirement. Dementia can exacerbate these concerns and even cause them to project their anxieties onto other people.
Food tends to be a particular point of contention for many older adults. Some experienced hardship and famine themselves or heard about it from their parents and grandparents and were therefore raised with the proverb: waste not, want not. The memories that dementia patients retain are often from decades back, so they might panic if they see that food is being wasted. For example, a senior with dementia might become overcritical of someone who doesn’t clean their plate or save leftovers. They might say something like, “That woman is throwing away food! That’s a sin! Look at her dumping her dinner in the garbage!”
Again, rationalizing with a dementia patient about something like this simply won’t be effective. Cases like these reflect the senior’s own anxieties, so it might be best to offer a very simple explanation for the other person’s actions, even if it happens to be a white lie. Provide reassurance that they are well cared for and then continue with redirection to a happier topic. A good response in the example above might be, “That woman is sick and can’t eat very much. Don’t worry, everyone here has as much food to eat as they want. Can I get you some dessert?”
Advice from other dementia caregivers
A forum member wrote, “This [behavior] can be mortifying for family members. An option to consider is printing out small cards that explain the person has dementia and may say or do things that aren’t socially acceptable. Then, hand those cards to anyone who seems offended or concerned.”
On outings, a dementia card is a discreet way to notify others of your loved one’s potential behavior or apologize after the fact for actions or remarks they’ve already made. It can say something as simple as “The person I’m with has dementia and may act out. Please be patient.” They can be easily handmade or you can find free or low-cost downloadable cards online.
Handling dementia and sexually inappropriate behavior
Hypersexuality is a shocking behavioral symptom that often catches families off guard. Seniors may say and do sexually inappropriate things as their condition progresses. Lewd comments and gestures can all increase due to neurodegenerative diseases such as Alzheimer’s, frontotemporal dementia, and even Parkinson’s disease.
Dementia patients commonly react impulsively in environments with certain objects of interest. Particularly in those with frontal lobe dementia, sexually inappropriate behavior can be common because of their lack of impulse control. These behavioral changes can be very difficult for family caregivers to witness, let alone manage. It’s important to monitor seniors living with dementia carefully to ensure their dignity and that of the people who interact with them.
First, we must acknowledge that an individual’s natural sexual desire doesn’t just disappear with age and infirmity. When dementia is part of the equation, though, this basic desire may remain intact while one’s sexual and social inhibitions decline due to worsening neurological damage to the brain.
Unfortunately, some individuals have always been inappropriate or pushed these delicate boundaries. Those living with dementia are unique in that they do not fully understand or have control over their actions.
If your father attempts to grope a caregiver or even a stranger, calmly say, “That’s inappropriate, Dad,” or something to indicate that his behavior is unacceptable. It won’t help to scold, however. Promptly remove him from the situation if possible. Apologize to the person affected and discreetly explain to them that your loved one has dementia and their actions are a result of the disease. If this happens to a professional caregiver, take comfort in the fact that they are trained to handle challenging Alzheimer's situations like these.
If sexually disinhibited behavior escalates and begins interfering with your loved one’s ability to socialize and/or go out in public, it can drastically affect their quality of life. Speak to their doctor and/or elder care providers about nonpharmacological and pharmacological strategies for managing this behavior. For example, assigning male caregivers to an older man who tries to grope female staff could prevent this sexually inappropriate behavior and protect the dignity of all involved.
Specialty clothing that is difficult or impossible for a senior to remove without assistance can help thwart instances of exhibitionism. Depending on the nature and severity of the issue, prescription drugs like antidepressants may be recommended to help reduce a patient’s libido, although this option does come with risks and side effects.
Advice from other dementia caregivers
In a thread about this topic, a forum member asked if a loved one with dementia can remember acting sexually inappropriate and, if so, should they apologize.
Another member responded, “You can’t explain or reason with dementia. They lost filters and say and do inappropriate things. They don’t even understand that their behavior isn’t acceptable or why they should apologize. You can only control and manage your response, realize it’s the disease, and consult a doctor to see how to possibly reduce the behavior.”
Every person is different. Sometimes your loved one may remember their behavior, other times they won’t have a clue what you’re talking about. Try to have patience and empathy, and talk to a doctor when you’re not sure how to respond to their new behaviors.
Seek advice from fellow caregivers and professionals
When these and other uncomfortable situations occur, we are often embarrassed for ourselves and for the person our elder once was. Learning that we aren’t alone helps, so I’d suggest talking with other caregivers, either in person or online, for support.
When we share our experiences with people who truly understand, our pain and mortification doesn’t take on a life of its own. As caregivers, we can gain perspective and useful suggestions for handling these challenging symptoms by communicating openly with one another.
To join the conversation, create a free account on AgingCare’s Caregiver Forum. The forum is a safe space where you can ask other caregivers questions, share your experiences, or just vent if you need to. Members of the forum come from a wide variety of backgrounds and experience levels, so there’s always an opportunity to learn something new.
Source
Hypersexual Behavior in Frontotemporal Dementia: A Comparison with Early-Onset Alzheimer’s Disease (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3596488/)