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A Caregiver’s Promise Is Their Bond

When caring for a person who is living with dementia, you may get to a point where you hear them mutter things that are so bizarre, that there is no making heads or tails of what they are talking about. But keep in mind, through all this chatter, you may come across personal information that should never be repeated to anyone.

“Patient confidentiality” is a trust and bond that should be taken extremely seriously by everyone who works in the healthcare profession. This rule should even apply to those doing the much-needed job of housekeeping. Everyone in general. Privacy is a public right and we, as a society, have an obligation to protect the memory impaired. A person with dementia could be having what seems like a normal conversation when suddenly they may become paranoid that everyone is against them and stealing from them.

Next, they may quickly demand that you go out to the back yard and start digging up coffee cans of money they buried behind the big oak tree. Chances are that money was dug up years ago. There can always be an exception to the rule. In a situation like this, his or her spouse, Power of Attorney or Legal Guardian should be informed.

But remember; it may not have to do with money, they may have stashed a firearm somewhere on their property that no-one knows about and ask you to retrieve it for them. Obviously, this information needs to be investigated immediately.

Another frequent problem when caring for those living with dementia is that he or she will get to a point where they rarely give the same answer to a question twice. So when they claim to have chest pains or some other type of aches, they should be taken seriously the first time and their physician immediately notified. Do not ignore their complaints, instead use discretion in discerning the severity.

Identity theft is another concern, just in the United States alone, an estimated 4.8 million identities were stolen in 2020.

It is part of the caregiver’s job to make sure the he or she is not being forgetful or foolish with their wallet or purse. The responsibilities of keeping them safe goes beyond just their wellbeing.

Even when a caregiver is out enjoying what little social life they may have, one must remain diligent not to spill out any personal information that could cause harm.

Today’s technology lends itself to the thievery of personal data. Sensitive emails and texts should always be deleted. There is lot to think about in how we need to keep these folks as safe as possible.

I personally know how stressful and demanding the job of being a caregiver is, and I truly hate to add more worries on top of what you already may have. But these people are depending on you and if the bond of trust becomes compromised, they may start holding back vital information such as severe symptoms they are experiencing.

A true caregiver/patient relationship must be built on honest-to-goodness trust. Stay faithful to your loved one. Loyalty is everything to them. Semper Fi.

Gary Joseph LeBlanc
Education Director
Dementia Spotlight Foundation

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Positively Georgia: Dementia Spotlight Foundation

Whitney Oeltmann and Alyss Amster talk with CBS 46 News about their experiences helping families affected by dementia.

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Early-Onset Speaks Out Webinar

Gary Joseph LeBlanc and Whitney Oeltmann host this webinar with special guest Carrie Richardson living with Early-Onset Alzheimer’s at age 39 and David Benedetto living with Early-Onset Alzheimer’s & Frontotemporal Degeneration age 41, speak openly about their experiences.


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Bathing Dilemmas and Dementia

Bathing can be one of most difficult personal care activities that caregivers face. The reason? Bathing and showering is an intense and intimate experience for people with dementia. Such people may perceive this hands-on procedure as being a threatening, even horrifying experience.

Some caregivers may witness their charges refusing to bathe at times, or even always. This behavior may have developed only because the dementia has caused confusion, such as the belief that he or she already bathed, or they may not actually comprehend what bathing even is at that moment.

I have a dear friend diagnosed with Lewy Body dementia, and she has told me straight out that she’s never bathing or showering again! My response to her was, “Does your husband know this? It won’t take long before he figures it out!” She explained that the minute the water touches her skin, she goes into hallucinations of cockroaches or other multiple legged critters crawling all over her. How terrifying is that?

Naturally, there is also the loss of independence and of privacy. As the caregiver, try not to take their behaviors personally. Having a calm, friendly demeanor will serve you best when coping with the negativity.

Here are some handy hints: When you begin the bathing process always remember to keep to a familiar routine. This could be the key to everything. For instance, if your loved one has always shaved before the shower, don’t upset the pattern. Let them shave. Just by changing this familiar repetition will likely cause bathing time to end in utter chaos.

Make sure your patients or loved ones with dementia are allowed to do as much as possible on their own. What you have to do in the initial stage of the disease is assist when needed and only with what is necessary. As the disease progresses they will need more assistance.

Prepare the bathroom ahead of time. This is very important. Make sure the room is comfortable and that the room temperature is pleasant; this is key. Tub baths can be difficult and dangerous. Always remember that those living with dementia are at risk for falling. If you are using a shower move in slowly as water suddenly hitting them on the tops of their heads might frighten them. Therefore, hand-held shower nozzles, a shower chair, rubber non-slip strips on the shower floor and sturdy, well-placed grab bars help ease movements and provide security for an often-precarious task.

No situation is exactly the same. And please, this is not a car wash folks. We’re not trying to pressure wash them: keep the water pressure turned down.

If someone with dementia is adamant and doesn’t want to bathe, don’t insist. Simply try again later, maybe using a different approach. A simple sponge bath will be fine at this point. If incontinence hasn’t occurred, they may not need a full bath every day. A couple of baths a week can be sufficient. The simple wash-up of face, hands and chest area can be done fairly easy at the sink.

Again, routine is crucial. Always bathe them the same time of day whenever possible. Also, use of the same bath products will help immensely. If they are used to a green-colored shampoo and you suddenly pull out one that’s pink, it may startle them, raising their anxiety level. Also, you will also want to use the same aromas. If they are used to a strawberry-scented hair product, stick to that.

Again, always be flexible. It may seem unorthodox but you may have to give them a bath while they are fully clothed. Use a warm, soapy washcloth under their clothing. Start at the top and work your way down, face first, then to the more critical areas such as armpits, the chest or under the breasts, then on to the perineal area. Use a large bath towel to cover their embarrassment. He or she will feel less embarrassment and at the same time will remain warm and comfy.

Remember, choose your battles; if one approach doesn’t work, try another. Taking the right approach when bathing those living with dementia will result in a satisfying experience for you and them.

Overall, building a positive, trusting relationship is cardinal. Use a positive approach, complete with conversation, care and consideration.

What you do and say makes all the difference. Be mindful of your demeanor as they are watching you closely and can pick up your

Please remember: the person with dementia is not trying to give you a hard time. They are the ones having the hard time.

Gary Joseph LeBlanc, CDCS
Director of Education
Dementia Spotlight Foundation

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The Hand-in-Hand Relationship of Anxiety and Dementia

Over the past several years, I have heard it promoted that anxiety and its symptoms be labeled as hidden elements of dementia. I don’t believe that they are hidden very well, for studies have shown that upwards to 70% of people living with dementia-related diseases will experience bouts of anxiety.

Consider the negative impact of being cognitively impaired; one can only wonder how anxiety would not become a symptom of dementia on a daily basis.

There are no doubts that the two go hand-in-hand.

I have found that, by keeping those living with dementia social, this, by itself, helps them retain a better quality of life. Their symptoms of anxiety are kept more at bay.

Recognizing the symptoms of anxiety is the first step in helping these people. Here are a few things we need to be on the alert for:

• Problems sleeping, or full-scale insomnia
• Cold or sweaty hands and/or feet
• Heart palpitations, tremors
• Excessive worrying
• Irrational fears
• An inability to sit still and calmly
• Dry mouth
• Muscle tension
• Numbness or tingling in hands or feet
• Panic attacks
• Upset stomach

We constantly need to become detectives while caring for those with dementia. If you start noticing signs of anxiety, I would start by inspecting their environment. Is there something or someone consistently around them when their anxiety rise up? Can you modify their environment to help them remain calm? How did you react?

Also, we need to listen closely to the frustrations of those living with dementia. The clues to helping them may be directly in front of you; you may just have to pay a little additional attention to what they’re trying to tell you. Calmly reassure these folks that you are going to try to address what is bothering them. Sometimes, just hearing those words will start toning down their symptoms. Respond to their emotions, not their behavior.

If you are noticing they’re building all this energy inside of them, constantly pacing or being very fidgety, work on finding an outlet so they can release some of it. Simply going for a walk with them may be extremely helpful.

Another tactic I would suggest, is placing something in their hands. There’s a saying I learned to live by, while caring for my dad; “Idle hands are the devil’s toys.” Have something available for them to attempt to work on, even if it’s something as simple as folding towels or sorting socks. Sometimes doing something repetitious can be very calming. Plus, it may actually help them feel that they still have purpose—which they do! The actual prevalence of their anxiety may be coming from their feeling they have little or no quality of life left. This would be disturbing for anybody!

If all of the above have failed, we need to address the situation with a qualified physician. Nobody should be left alone in the throes of an anxiety attack!

There are several different classes of anti-depressants that work well for anxiety. The patient’s doctor should always consider whether this medication is going to be used short or long-term. With many of these folks, as their dementia advances, they actually may no longer experience heavy anxiety.

It is extremely important that we know what type of dementia-related disease which with they have been diagnosed. Those living with Lewy body dementia can have adverse reactions to anti-depressants and neuroleptics medications, also known as antipsychotics. Please pay close attention if symptoms get worse or hallucinating begins.

It is unfortunate that anxiety compounds the misery for those who have already been diagnosed with dementia-related diseases, but this anxiety needs to be addressed, and right away. I have too many caregivers say to me “Well, they have a doctor’s appointment next month.” No. We do not wait weeks or even days. We pick up the phone and address this situation as soon as possible.

Even if you can possibly correct some of the onslaught of anxiety through caregiving tactics such as redirection and maintaining daily routines, the physician needs to be aware of what is happening to his or her patient.

Gary Joseph LeBlanc, CDCS
Director of Education
Dementia Spotlight Foundation

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The Difference between Hallucinations and Delusions

If you should be experiencing the illness of loved ones or if you are caring for patients in a health care setting, it is essential that someone become their advocate; even more so, it is necessary if they are afflicted with Alzheimer’s disease or some other form of dementia. Being their voice may mean you will have to explain what you believe is ailing them, to a medical professional or to their physicians. This becomes especially important during the latter stages of the disease. You will likely be required to differentiate between symptoms which can appear strangely like one another.

I have noticed two mental conditions which the general public commonly mistake as being the same thing: hallucinations and delusions.

A delusion is a fictional belief about something, someone or even about one’s self. For instance, a common delusion that occurs within Alzheimer’s patients is the notion that everyone is stealing from them, taking all their prized possessions.

Suspicion and delusions seem to go hand in hand.

Hallucinations, on the other hand, are false perceptions of objects, people, or events. They are not only visible to the person experiencing them, but can be heard, smelled, and tasted by the patient. The hallucinations can become very frightening and confusing, therefore, exceedingly difficult for caregivers to co-ordinate.

Discuss this matter with physicians. There are medications that may help. If these hallucinations are scaring your patients who, in turn, are building up high levels of anxiety, and redirection will not work, their doctors may want to prescribe something that will.

This, however, is where it is so important for the patient to be correctly diagnosed with the type of dementia-related disease he or she has. If it is determined that it is Lewy body dementia, the antipsychotic medications should be avoided.

At about nine o’clock one morning my dad began showing signs of being delusional and became extremely upset. “They’re breaking into the building next door! All the tools behind the building are being stolen!” Over and over Dad insisted upon this, quite loudly, throughout the entire day. The thing is, the other building was not even visible from the house; but he insisted that he saw at least five guys “over there” breaking in.

Finally, I walked him “over there,” across the field. I repeated this walk with him five times in hopes that it would settle him down. At last, around 5:00 p.m., I just couldn’t take it anymore.

I phoned my sister and begged her to drop everything she was doing and come over immediately. Upon her arrival she suggested that I should get away and take a break for a while. I responded that the only thing I wanted to do at that moment was to get some sleep!

Delusional behavior is only one of the cruel effects of dementia-related diseases and was one of the hardest for me to bear. At that point, Dad had been suffering from this pillaging disease for practically a decade, and what I’ve just described is one of its most heart-rending facets.

Again, hallucinations and delusions are two of the most strenuous side effects for caregivers to contend with. You will really need to call upon all of your endurance in order to avoid losing your patience. Exhibiting signs of frustration will only make matters worse.

Years ago, on a Memorial Day weekend, Dad took a gander out the kitchen window and asked, “What are those twenty-five people doing having dinner in our backyard?” Something similar may very well happen with your patient.

If it does happen that your patient honestly believes he or she is witnessing something, do not turn it into a debate. Period! Instead, be affirming with, “I just went out and checked. No picnic now! They must have just left.” You might have to actually take a walk outside and circle the house. (At this point you probably need some fresh air and some good ol’dirt kicking anyway.) Whatever you do, don’t get into an argument. It will only twist things further and you both will likely be headed for hours of extended madness.

There were many times it became necessary to call for back-up because I could not handle Dad’s hallucinations one more minute. Like a “horse rode too hard and put up wet,” I needed open pasture. Get the point? Dementia patients can use you up.

At this point during my campaign with dad I had considered myself to be a seasoned caregiver, but upon retrospect, it is now easy to admit that the mental madness of these hallucinations and delusions can take even the best of us down.

What is utterly amazing is that such fallacies we have discussed may remain in patients’ minds sometimes for days, but then something that just happened two minutes ago will no longer exist. True or not, what these folks believe they are seeing is as real to them as the ground we’re standing on.

Gary Joseph LeBlanc, CDCS
Director of Education
Dementia Spotlight Foundation

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The Falls of Dementia

Here’s something I noticed many years ago: “The further advanced dementia becomes, the closer their feet will stay to the ground.”

What I mean by this is, people who are living from a dementia-related disease most likely develop an unsteady gait, hardly lifting their feet. Instead they will develop a shuffle and this creates a higher risk of falling. My advice is this: before they reach this point, as a safety precaution, discard all of the throw rugs in their homes.

However, this is only one of the concerns to consider. There are many other hazards that may need to be addressed.

Statistics show us that 30% of all senior citizens fall each year. That percentage becomes much greater if they develop dementia. This is the primary reason that I’m asking all hospitals that are now implementing the Alzheimer’s/Dementia Hospital Wristband Program, to also include their “Fall Risk” program with all patients that are at risk for cognitive impairment.

Being cognitively impaired can also affect such patients’ sense of perception. Just like that warning sign on the side view mirror of your vehicle, for many objects may appear closer than they actually are. Sometimes, when they’re approaching a step or a curb, they may make the mistake of lifting a foot way too early, throwing them off balance.

Anxiety levels and a state of confusion may also become a factor. Many times, I witnessed my dad attempting to get himself out of his chair and not quite making it, causing him to fall backward into his seat. Although he did not get hurt, when he finally did make it to his feet, he would remain exceptionally unsteady and full of trepidation. Even the fear of falling itself can become hazardous for these folks.

Medications are another major concern. One of the dementia medications my father was prescribed threw off his equilibrium. Every day I was afraid he was going to fall! After his doctor finally rescinded that prescription, Dad recovered most of his balance.

There are many things, large and small, that we can do to help our loved ones to stay safe at home. One of my favorites is keeping their houses well lit. Even at night, when everyone is asleep, keep those lights burning!

Caregivers should help their patients to stay strong by encouraging them to exercise. Leg lifts are great. Join in with them and they may think it’s helping you as well. (Maybe it is!) These can even be done while they’re sitting in a chair.

Speaking of chairs, rocking chairs are a great tool for maintaining good circulation in patients’ legs. Without them even knowing it, every time they pump their feet to create the back and forth motion, they are strengthening their legs and providing a better blood flow throughout their lower extremities. Also, the repetition and movement can be very soothing for them. The one thing I have to warn you about here, however, is that they may need assistance getting themselves out of the rockers.

Certain rooms can be made safe with simple adjustments. For example, in the kitchen, forget about using the top shelves altogether. Many falls occur while a person is stepping on a stool or climbing onto a chair to get something down that’s beyond “normal” reach.

Considering the bathrooms, there should be multiple grab bars by the toilet and in the bathtub/shower. Non-slip adhesive strips are essential. And if your patient will be using a shower chair, buy one that has a strong back on it so he or she won’t tip over backwards. In addition, a raised toilet seat (a “riser”) will help them and, really, any elder person to stand up easier.

Pay close attention to what your loved one wear on their feet. Those old fluffy slippers and flip flops need to go. If they’re having trouble with their shoelaces, it’s time to switch to Velcro straps or loafers.

The list continues! So, I will stop here for now. Just use your common sense. Take a slow walk around their houses with eyes wide open. Make certain that the street address is visible in case of an emergency. Too many times, first responders are called out to a home and end up circulating the neighborhood because the address was not well-marked. A quick response time could be crucial.

You can follow every rule in the book and accidents can still happen, problems can still occur. What we need to do is lower the odds and keep these folks from getting hurt.

Gary Joseph LeBlanc, CDCS
Director of Education
Dementia Spotlight Foundation