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 are not 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
Handling dementia-related behavior changes while out in public is 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 one’s 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 who interact with clients and residents regularly. 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 are not completely comfortable with. This is the perfect storm for a derogatory quip and hurt feelings.
Now, 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 is no reasoning with dementia. Those in the moderate and severe stages typically are unable to engage in conversations about respect or political correctness, and, even if they are, they’ll likely forget the discussion shortly afterwards. Instead, the best option is to quickly put an end to their abrasive comments, often through acknowledgement and redirection, and then ensure the person they were talking or referring to understands that 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 segue into 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 the refusal 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, but in other cases, these offensive outbursts come out of nowhere from seniors who had never expressed such sentiments before in their lives. This is just one of the many shocking symptoms that dementia can present.
How to Handle a Dementia Patient’s Thrifty Behavior
Regardless of whether they have dementia, 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 mantra, “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?”
Handling Sexual Behavior and Dementia
Most family caregivers have made peace with dementia symptoms like memory loss and repeated questions. However, there is a shocking behavioral symptom that often catches families off-guard: hypersexuality. 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.
These behavioral changes can be very difficult for family caregivers to witness, let alone manage, but it is important to monitor them carefully to ensure both the patient’s 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 in the brain. Unfortunately, some individuals have always been inappropriate or pushed these delicate boundaries, but dementia patients are unique in that they do not fully understand or have control over their actions.
If your dad attempts to grope a caregiver or even a stranger, calmly say, “That’s inappropriate, Dad,” or something to indicate that their 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. It may be wise to speak to their doctor and/or elder care providers about nonpharmacological and pharmacological strategies for managing this behavior. For example, assigning male caregivers to a male dementia patient 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 dementia patient 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.
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 if we communicate openly with one another.