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Stages of Dementia and Managing Doctor Visits: 5 Tips

  
  
  

 Stages of Dementia

Medical check-ups and consultations are a fact of life. No one enjoys the necessary pap, prostate, breast or the much dreaded colonoscopy exam. Most of us go with some trepidation – but eventually, we go.

If going to the doctor is a burden for us, imagine what it’s like for someone suffering from dementia or Alzheimer’s. It should come as no surprise when a loved one with memory loss puts off going to the doctor – who can blame them? Hearing potential bad news is enough to make anyone come up with more excuses than a kid who didn't do their homework.

Mom was no different – but there was a catch. Even before dementia, mom avoided visits to the doctor like the plague!

A person who spent their entire life being wary of doctors is going to be a challenge to get to those appointments no matter what stage of dementia they are in. And I should know.

Before working with thousands of clients I did the same thing that many caregivers do...I told mom that she had an appointment. Talk about setting us up for failure!

Mom took each of my appointment reminders in stride and appeared to go along with the schedule as planned. I arranged my schedule (with two young kids – not an easy feat) and called Mom and Dad the night before so that we were all on the same page. The morning of her doctor visit I called to remind that I was driving 30 miles in rush hour traffic so they should be ready.

However, once I walked into their home, mom calmly told me that she wasn't going to go to the doctor. Frustrated...a little. Furious...a lot!

With over 25 years of personal experience as a caregiver and professional who specializes in dementia, I have learned that to get a person with any form of memory loss to doctor appointments requires creativity and perseverance.

In my dementia book, "Alzheimer's Disease and Other Dementias: The Caregiver's Complete Survival Guide" I guide you through over 13 tips and explanations that will help you successfully get your loved one to doctor visits, no matter what stage of dementia they are in.

   Download First Chapter

For many caregivers, there comes a time when you have to draw the line. Here are five steps to get a person with dementia to the doctor:

1. If you’re loved one is in the early stages of dementia call them with the date and have them write the appointment in on their calendar. This will be an initial test to see how they react. But prepare yourself for excuses.

2. If the person is anxious, avoid giving too much advance warning. Call them the night before and light heartedly say, "Mom, I just checked the calendar and tomorrow you have an appointment with Dr. X. I'll pick you up and we will have breakfast/lunch/dinner before or after.” This eliminates the chance of excuses.

3. Tell your loved one that you are picking them up for breakfast/lunch/dinner. Once they are in the car tell them that the doctor called you earlier and that you have to drop some papers off at Dr. X's office. Have them come in with you so they are not waiting in the car. When you get to the front desk (which you have pre-arranged with the office staff) have them tell you that there was a cancellation and that the doctor can see you both now as a courtesy.

4. A little loving deception can go a long way. Tell Mom that YOU have an appointment with Dr. X and that you want her to be there with you for support.

5. In some cases you may need to use whatever works. Threats: "I'm not doing X until you go to your doctor appointment.” Guilt: "I love you and need to be sure you are healthy.” Figure out what will get to them enough to get them there.

Since each situation, person, relationship, and stage of dementia is different, the way you handle this will vary. What works for one person or family, may not work for another. The best thing to do is have patience, and prepare for the possibility of this being a difficult caregiver process. 

Ask your dementia care question

Image courtesy of Michael Carian

Stages of Dementia Part Three: Severe

  
  
  

 

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In this series we’ve discussed the mild and moderate stages of dementia. This section of the Stages of Dementia series, we’ll move onto the severe stage of dementia – where your loved one stands in this stage, what’s to come, and what is required of you as a caregiver. 

Once your loved one has either been diagnosed or has declined to the severe stages of dementia, this is a crucial time for you to know what you are capable of as a caregiver.

Caring for my mom during this stage was at times, the most frustrating of all the stages. I never saw it coming!

In my book, Alzheimer's Disease and Other Dementias: The Caregiver's Complete Survival Guide, I talk about the slow decline, the plateaus, and just when I thought I had figured out a normal routine – BOOM – a sudden, steep decline happened.

Nothing can totally prepare you for the severe stage of dementia. In spite of your best attempts to slow or stop this disorder, once a person arrives at the severe stage there is no turning back. The reality of dementia can no longer be ignored.

What does the severe stage entail?

In this stage, people suffering from dementia will no longer be able to recognize themselves – the person who they see in the mirror is a stranger. Caregivers will lose their role of spouse, child or family member and now become their “friend.”

Not being able to recognize or understand their surroundings can lead to hallucinations and delusions along with anxiety and paranoia. For many, wandering is due to wanting to return to the safety of home. Not the home they are currently in – a home from their past. And there is no longer a meaning or purpose for food, bathing, toileting or sleeping.

During this stage of dementia, a person with memory loss can typically develop sleep disorders. They either sleep too little or too much. When a person sleeps too little, it will cause increased agitation, anxiety and challenging behaviors. Too much sleep will interfere with the circadian rhythm and the sleep cycle will be thrown off.

One of the major causes of physical and emotional complications is lack of hydration. 

Mobility issues increase for the person in the severe stage of dementia. Since their brain has difficulty sending or receiving messages properly, simple learned behaviors such as walking, sitting, and standing become problematic.

Ask your dementia care question

What should caregivers expect?

In the severe stage of dementia the person who you are caring for will no longer be able to be live alone or be left alone. As mentioned above, during this stage, most people will have:

  1. Severe memory loss

  2. Disorientation
  3. Wandering
  4. Sleep disorders
  5. Loss of mobility

  6. Less able to verbally communicate
  7. Weight loss or gain
  8. Fall risk

  9. Incontinence

  10. Challenging behaviors

Every thing that we do is learned. When a person has dementia, what was once learned becomes unlearned. Many of the challenging behaviors listed above are due to severe memory loss.

Unfortunately as a caregiver our sleep cycle revolves around the person we are caring for. And our sleep deprivation can increase stress, affecting our physical and emotional wellbeing.

As discussed in the Stages of Dementia Parts One and Two, the MMSE is a test often used to determine someone’s stage of dementia. This is a 30-question examination composed of questions regarding time and place, recall, reading, comprehension, math and visual spatial. The amount of questions answered correctly determines the MMSE score.

The MMSE score of severe dementia is 10-1. In some cases, dementia sufferers may no longer be able to answer most or any of the 30 questions of the MMSE. Others may have a high cognitive reserve allowing them to score in the moderate level of this test, when in reality they are in the severe stage. It’s important to focus on the things that your loved one is capable of doing. The MMSE test is not a complete diagnosis – just a guide.

How long will the severe stage last?

Since everyone is different, this stage can vary in length. The severe stage can last anywhere from 1-10 years, but it’s important to remain focused on your loved one’s particular situation and avoid getting to wrapped up in the facts. Dementia will always vary from person to person and no case is ever the same. 

Ask your dementia care question

Photo courtesy of Vince Alongi

Stages of Dementia Part Two: Moderate

  
  
  

Stages of Dementia

During the different stages of dementia, when you look back at your loved one’s life, you can clearly see the signs of memory loss that were not there before. In the blink of an eye, our loved one’s can go through one or more stages of dementia without us realizing, recognizing, or accepting these changes.

However, once our loved ones go from mild dementia to moderate dementia – their memory loss is now more pronounced. As caregivers, we will need to know what to expect in in each stage in order to be better equipped to care for our loved ones.

In the last section of this series, we went over the mild stage of dementia. In this second section of the Stages of Dementia series, we’ll focus on the moderate stage - where your loved one stands in this stage, what’s to come, and what is required of you as a caregiver. 

As a therapist and daughter, the moderate stage of dementia was the most difficult to deal with. Mom was able to do some things- but not able to do others. Because she could successfully do some things, I mistakenly expected her to be able to do everything.

As I explain in (my book), if mom was driving a car and encountered detours – in the mild stage she’d be able to figure it out. But in the moderate stage – she would have some serious problems. 

So what is moderate dementia?

A person who has moderate dementia is going to have problems successfully performing and doing what they always have done. It will probably be frustrating to you, but remember that it’s more frustrating to the person who is in the moderate stage of dementia.

The person with dementia believes that they are still capable of living independently, and as caregivers we want to believe it too. But in reality, a person with moderate dementia will need additional help and guidance whether they think they need it or not. 

They are now having changes in emotions and insight that can put them in jeopardy. Following conversations will become hard and learning new things will become impossible.

It may be more difficult for them to follow conversations, put ideas in place, express themselves, or even be able to understand and comprehend written words – such as words on a list or a restaurant menu. These changes can cause many with moderate dementia to socially isolate themselves.

Ask your dementia care question

What should caregivers expect?

Moderate dementia will be different for everyone. Some of the common signs are:

1. Increased memory loss and confusion (forgetting names, dates, events, places).

2. Problems with language (reading, writing, comprehension, numbers).

3. Angry outbursts due to frustration.

4. Difficulty learning new things and forgetting how to use old things.

5. Restlessness (includes wandering and pacing).

6. Anxiety, hallucinations, paranoia, irritability, delusions.

7. Loss of impulse control.

8. Repetitiveness.

9. Poor judgment – when it comes to important decisions about health, finances and safety.

10. Sleep disruptions.

As a caregiver, you do have some control. Proper medication, environmental changes and training can make this time better for both of you. Calming reactions, distractions, and reminiscence therapy are just some of the tools that can help.

As discussed in the mild stage of dementia post, the MMSE is a test often used to determine someone’s stage of dementia. This is a 30-question examination composed of questions regarding time and place, recall, reading, comprehension, math and visual spatial. The amount of questions answered correctly determines the MMSE score.

The MMSE score of moderate dementia is 20-10. Once again, this test or these scores are not scientifically proven. It’s important to look at your loved one’s day-to-day functioning. How is the person with memory loss getting through the day? What areas of their day are they successful in and where or when do they need more help?

How long will the moderate stage last?

No one knows how long this stage will last. It can be 2-20 years. It all depends on the person, their environment, genes, and personal or emotional history.

Every person is different. Take your time, have patience, and educate yourself on this stage and the stage to come. Stay tuned for the next post in this series on the severe stage of dementia. 

Photo courtesy of Michael Carian

Stages of Dementia Part One: Mild

  
  
  

 

Stages of Dementia

There has not been a time where I haven’t asked a client, “What stage of dementia is your loved one in?” It’s a loaded gun question. Each stage of dementia will mean something different to each person. In this series, I will demystify the stages of dementia and explain what each one entails.

There are so many websites defining the stages differently that they confuse even me – a trained Alzheimer's and dementia care consultant. Many websites include detailed sets and subsets, but it’s important for caregivers to stay focused on the general facts without getting too wrapped up in the details. The details of each stage will vary from person to person.

As I stated in Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide, “Stages of dementia are not set in stone. Every person is different and therefore each stage of dementia will be different for everybody.” The stages of dementia will differ due to their particular type of dementia, their environment, and their relationship with the caregiver.

In the most basic breakdown, there are 3 stages of dementia: mild, moderate and severe. In this section of the series, we’ll focus on the mild or early stage of dementia – where your loved one stands in this stage, what’s to come, and what is required of you as a caregiver. 

What does the mild stage entail?

Even when a person has early onset dementia – no matter what age, they will exhibit behaviors and characteristics of mild dementia. Changes in behavior, personality, and memory are what bring them into diagnosis. Early onset is unexpected – it’s no different then early onset puberty or menopause. These are things we expect to happen later in life, but sometimes we’re taken by surprise. 

In a nutshell, early dementia is sometimes referred to as mild cognitive impairment (MCI). With any form of cognitive impairment, your loved one will lose the ability to process information. Your loved one will be having problems with memory, language, perception, judgment and reasoning.

It’s important to know that not all people who are diagnosed with MCI or mild dementia go on to develop Alzheimer’s disease or other forms of dementia. Some people can remain stable for years, some return to normal, and then there are those who will progress into the next stages. Who this happens to, or why – even doctors don’t know.

Ask your dementia care question

What should caregivers expect?

Preparing for the future is difficult. But if you are transitioning into the role of caregiver, one of the best things you can do for yourself and your loved one is to educate yourself. Education and a strong team in place will help you through this time. Every family situation is different and presents unique situations. As a certified Geriatric Care Manager, therapist, and certified family mediator I am trained to guide families to their best solution.

Below are some warning signs of mild dementia to look for:

  1. Difficulty remembering names of new people, places and things.
  2. Losing or misplacing common items (keys, remote control, phone, etc.).
  3. Forgetting recent conversations or appointments.
  4. Sudden panic/anxiety in a situation they could handle prior.
  5. Getting lost in recent surroundings.
  6. Now having problems performing usual tasks (computer, card games, meal preparation, banking, etc.).
  7. Not being able to handle more than one task at a time.
  8. Personality changes (loss of previous social skills).
  9. Inappropriate behavior or responses.
  10. Difficulty with planning future events.

Often times, the stage of dementia is measured by a test called the Mini Mental Status Exam or MMSE given by a doctor. This is a 30-question examination composed of questions regarding time and place, recall, reading, comprehension, math and visual spatial. The amount of questions answered correctly determines the MMSE score.

The MMSE score for mild dementia is 29-21. These numbers give a lot of leeway. They can also give family members a false sense of confidence that things are not as bad as they appear. Of course, this test is not set in stone, it’s a simple procedure used to gauge where a person is on this scale. However, it’s not proven. We can all get a day, season, or county wrong especially when under pressure. The person administering the test and how certain words are presented can also have an effect on the results.

How long will the mild stage of dementia last? 

Besides being asked the common warning signs or symptoms, I’m often asked “How long will this stage last?” Unfortunately, nobody truly knows. 

With proper planning and guidance, I’ve seen many cases where clients remain independent with only a little help from loved ones. Others, due to their environment, genes, personal or emotional history – the decline, can occur at a faster pace.

The stage titles of dementia, although not set in stone, are used as guidelines for caregivers to better understand where their loved ones are in their dementia journey. But each person could have a different experience in a particular stage. Stay tuned for the next section of this series on the moderate stage of dementia.

   Download First Chapter

Photo courtesy of Michael Swan

Get Your Free Dementia Caregiver Consultation

  
  
  

Dementia caregivers - today is your lucky day! We're excited to announce that during the month of December, we will be giving away a free "Ask Your Question" consultation to one lucky new subscriber.

Every caregiver's situation is different throughout the stages of dementia. We all have our own personal questions and concerns, but not everyone has the access to an experienced professional to help them regain control of their lives. Here's your chance!

During the entire month of December, enter your email in the "Subscribe via Email" form on the upper right hand side of this page. New subscribers during the month of December will automatically be entered to win a free "Ask Your Question" consultation. The winner will be notified via email once the contest is complete, and will be able to get personalized advice for whatever they are going through as a dementia caregiver. 

If you know someone who would benefit from personalized dementia care advice, please share this contest and the "Ask Your Question" consultation with them. 

Ask your dementia care question

Dementia and the Diagnosis

  
  
  

Dementia and the Diagnosis

The thing I am about to say is not going to be politically correct. It may seem harsh, but it is an absolute truth that every caregiver needs to hear and understand.

We have all heard the expression, "No one here gets out alive.” In the past 100-year history of dementia, no one has ever gotten through the stages of dementia alive.

As caregivers – as much as we read, research, donate or participate – in reality, eventually our loved ones are going to pass. And when the diagnosis is made, the writing is on the wall. It’s when we choose to face and accept this fact, that we will be able to break through and alter the course of dementia.

Like you, I read all the articles in newspapers, journals, and web sites on how to slow down, stop or reverse dementia. And I hate to burst your caregiver bubble, but the majority of them are written to sell newspapers, products, or research programs. Shocking, instilling fear, and giving false hope are just calls to action to sell something to those in times of desperation.

When a loved one is going through stages of dementia, it’s difficult not to hold out hope. But as caregivers, we spend valuable time chasing rainbows. To date, there is no pill, vitamin, diet, exercise program, memory puzzle or game that is going to reverse or slow down dementia. Trust me when I say, that when a cure is found – we will all find out about it.

Truthfully, no one knows what causes Alzheimer’s or dementia, or how to stop it or reverse it. No neurologist, scientist, researcher or the pharmaceutical company – no one. Whether you like what I have to say or not, it’s important you accept it.

No matter what you'd like to think, once thought, or continue to believe, it’s important you know that as a caregiver, dealing with a loved one in the stages of dementia, your input is going to be either helpful or detrimental. The person you’re caring for depends on you. There comes a time when caregivers learn to accept this fact, and are able to move on to better care for their loved ones.

As your coach, I will guide you through and keep you informed on important medical discoveries and help you determine what is a right fit for you and your loved one. Second, third, and fourth opinions are often an option for caregivers and families dealing with the stages of dementia. However, putting your loved one through these appointments and tests can often be more detrimental than beneficial.

But don’t give up hope.

As a caregiver you will need to keep in mind that stages of dementia is just a loose term to help you describe the mental and physical state that your loved one is in. It's not set in stone and as a caregiver you still have the power to make this situation better. Know that behavioral and environmental changes will have a positive impact on both of your lives.

As caregivers, we have become reliant on medication to solve problems. But often times, medications solve one problem while causing a new one. And so, we call the doctor to get another medication to solve the new problem that the previously prescribed medication caused. It’s a vicious cycle.

It’s important to accept at some point that you are taking care of your loved one because of a brain changing disorder. Dementia is an irreversible progressive brain disorder. The person that you care for will decline over time, regardless of the medications they are prescribed.

   Download First Chapter

So as a caregiver, what can you really do to help your loved one through their stages of dementia? Keep faith and a level head and follow some of these tips to help both you and your loved one’s lives.

1. Learn everything you can about dementia. Knowledge is power and it will give you an idea of what to expect.

2. Recognize and accept what you are now dealing with. Denial will only work for so long.

3. Communication skills are a must. Timing and communication with your loved one, family, and even yourself, is the most important thing you will do as a caregiver.

4. Trust your instinct. If you think that you need another doctor or diagnostic test – then go for it. Better to be safe than sorry.

5. Have all of your paperwork in order. Know that living wills and a power of attorney will limit or help you.

After dealing with thousands of clients, I’ve found that being honest is the best way to successfully get through this time. Dealing with the reality of the stages of dementia and what needs to be accomplished is the most direct and proactive approach. Some want the facts right away, some aren’t quite ready for them, and some choose to ignore them.

Sugarcoating information doesn’t do anyone any good. As your coach, I’m here to give you the best information and advice that will address the stages of dementia and what you’re going through. Each situation and family is unique.

As a team, we will explore the best options available for you and your family and together we will make every stage of dementia better for everyone.

Ask your dementia care question

Photo courtesy of Ann Gordon

What is the Difference Between Dementia and Alzheimer's?

  
  
  

Stages of Dementia

Many new caregivers are bombarded with the news that their loved ones have dementia, and aren’t quite sure what their first step should be. Educating yourself on the facts of dementia is extremely important in order to provide proper care for your loved one. But many find themselves unsure of the difference between Alzheimer’s and dementia, and the many other forms of dementia out there. With so many names and causes, this can be extremely overwhelming for new caregivers.

After seeing and living with bizarre behaviors, personality changes, and forgetfulness, things change after receiving a diagnosis. Although reality sets in after putting a name to these signs and symptoms, caregivers can also breathe a sigh of relief because they are given a sense of direction. What was once the unknown now has a name. It is important as a caregiver, before or after the diagnosis, that you educate and understand the different forms of dementia.

So what is the difference between dementia and Alzheimer's?

Dementia and Alzheimer's are often used interchangeably, but that is not always correct. This often leads to more confusion throughout the different stages of dementia. Dementia is a set of symptoms, not a disease. Dementia is the irreversible and progressive impairment of a person’s memory, judgment, reasoning, comprehension, and logic to the point where is affects their daily life and activities. Eventually, the ability to do standard activities that allow us to live independently is diminished.

Ask your dementia care question

Alzheimer’s disease on the other hand, is a cause of dementia. There are over 86 different types of dementia, Alzheimer’s is just one. Alzheimer’s is a progressive disease of the brain that causes dementia, impairs memory and cognitive function.

I often refer to dementia as an umbrella term. Picture dementia as an umbrella and each spoke of the umbrella is a different form of dementia – Alzheimer’s Disease, Lewy Body, Frontal Temporal, Vascular, the list goes on.

As a caregiver, understanding the different types of dementia is crucial because the course and treatment will be different depending on the type your loved one has. A proper diagnosis and understanding of that diagnosis will allow caregivers to know what to expect and plan for. Some dementias can be a long lasting ordeal, while others have much shorter time frame.

Try educating yourself on the main four types of dementia I listed. This is a good place to start if you’re trying to get a better understanding of your future as a caregiver. An informed caregiver is your loved one’s best advocate.

  Download the First Chapter

Photo courtesy of Mcbeth

Dementia: 101

  
  
  

Dementia 101

Dementia: 101

Whether you are a new caregiver, or have been dealing with dementia for quite some time, there will come a time that you need to address what you are dealing with to successfully care for your loved one. But educating your self about what dementia is, who gets it, and how, you’ll be able to better care for your loved one and understand that they are going through. The more you know, the better both your lives will be.

So…what is dementia?

Dementia is a syndrome of intellectual impairment. It is irreversible and progressive. Signs of dementia appear when nerve cells in the brain stop working and lose connections to other brain cells. As a caregiver, this means that things like memory, judgment, reasoning, comprehension, and logic will be affected in your loved one. Most people experience the loss of nerve cells as a part of normal aging, but those suffering from dementia experience it at a much greater scale.

Who gets dementia?

Dementia is considered a late-life disease because it tends to develop in the elderly. Statistics show that 5-8% of people over the age of 65 have some form of dementia and this percentage is said to double each additional five years. Genetics are said to play a major role in early diagnosis, but there are also some environmental effects that will need to be considered. Substance abuse, tumors, head injury, metabolic disorders, thyroid conditions, infections, combining medications, poisoning, or low blood sugar are some contributing factors to dementia.

Ask your dementia care question

Why do certain people suffer from dementia?

Many wonder why certain people suffer from dementia, and why others remain sharp as a tack in their old age. While there is no definitive answer to this question, current research indicates there are factors that can have a major affect on your risk of developing dementia. Keep in mind that the risk factors below are not yet scientifically proven, but studies that are being thoroughly examined and researched.

Risk Factors of Dementia

  • Age. In most cases, your risk for dementia and Alzheimer’s increases as you age. However, the older you get without having dementia, your chances of dementia goes down.
  • Alcohol. Studies show that those who drink large amounts of alcohol have an increased risk for dementia. While other studies indicate moderate alcohol intake can be protective.
  • Smoking. Smokers are more prone to vascular dementia, or the slow down or stop of blood flow to the brain.
  • Genetics. Studies say that you are more likely to develop dementia if one or more family members suffer or have suffered from a form of the disorder. However, there is much speculation of genetics and inheriting diseases and it is not proven.
  • High blood pressure. Hypertension can cause strokes which lead to cognitive decline and memory loss.
  • Diabetes. Low blood sugar levels effect the brain, as well as other parts of the body. Uncontrolled blood sugar can lead to several conditions, dementia is just one.

By familiarizing yourself with the fundamentals of dementia, caregiving will become something you manage confidently head-on. Download the first chapter of "Alzheimer's Disease and Other Dementias: The Caregivers Complete Survival Guide” for a more in-depth look on how to maintain balance during your caregiving journey. 

  Download the First Chapter

Photo courtesy of Topeka Library

Dementia Caregiver Giveaway!

  
  
  

Dementia Book

We're very excited to announce that we'll be giving away a free copy of "Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide" to a new member of our community every month! Simply enter your email in the "Subscribe" form on the upper right hand corner of this page, and you'll be entered to win. 

This is an easy-to-read book that will give you the necessary resources to make practical and informed decisions regarding the best possible care for you and your loved one. 

   Download First Chapter

Written by a licensed clinical social worker with twenty-five years of experience working with families coping with the stages of dementia, Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide offers useful and vital information on:

  • Working effectively with health care providers to get the best treatment for your loved one
  • Handling difficult behaviors that change over time
  • Making the home safer using simple, low-cost tools and techniques
  • Evaluating and choosing respite care and long-term care options, including adult day and home care services
  • Finding legal and financial assistance
  • Improving the quality of life for you and your family
From tips on preparing for the first visit to the neurologist, to advice on coping with changes in daily life, this comprehensive, 398-page book provides detailed and accessible information for all those caring for someone with memory loss.

Best of luck, and please share with anyone you think would benefit from winning this guide!

Stages of Dementia and Diapers: Part Two

  
  
  

Stages of Dementia

There isn’t a day that goes by that I don’t receive an email or phone call from a caregiver concerning diapers. Ultimately, diapers mean incontinence and this is a situation that no caregiver wants to deal with. Myself included.

These inquiring minds, which are more often than not caregivers in crisis, have reached a point where they know that their loved one is in a situation that needs to be addressed.

For many caregivers, by the time they reach out to me, they are at their wit’s end. And as an experienced caregiver, I don’t blame them. I’ve walked in those shoes.

As I shared in part one of this series, the frustration of ruined furniture and car interiors is something that comes with the territory.

I’d like to share with you a story from when I cared for my mom. This story is forever etched in my mind. And what has been seen cannot be unseen.

The last time I took her to a restaurant, was the last time I took her out without her wearing a diaper. Mom loved Red Lobster and so did my kids, so off we went. As soon as we got to the restaurant, I took Mom to the bathroom. Needless to say she was in a stall by herself, so I just assumed that she had taken care of business. I should also mention that before we left the house, I took her to the bathroom then as well.

As we were sitting at the table, Mom announced she, “spilled her water.” Had she been drinking water at all, that would explain the puddle around her chair. But she hadn’t touched her water glass once. It was clear what had happened.


Over the years I have heard from thousands of client’s experiences similar to mine. During the mild to moderate stages of dementia, loved ones who have incontinence will often say illogical things. “The roof leaked and the bed is wet,” “I spilled my water again,” “the waitress was clumsy,” “water splashed from the sink,” “someone came in and poured water on me,” and the list goes on.

To start, some of the stories are believable. Until they occur more and more frequently and there is no denying that you are dealing with an incontinence issue.

Cue the crisis emails and my phone ringing off the hook.

It’s important as a caregiver that you know there is a difference between incontinence itself, and pre-mature incontinence. In “Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide,” I go into specific detail on how to tell the two apart and how to successfully deal with each one. But no matter what stage of dementia your loved one is in, there will come a day when they will be incontinent.

Dementia affects their ability to recognize when they have to go to the bathroom, the physical ability to actually make it to the bathroom, and the steps they need to take to go to the bathroom if they make it there.

Ask your dementia care question

Since no one goes through the stages of dementia the same way or at the same time, it’s difficult to pin point exactly when this will happen. It could happen at any point. I have clients whose loved ones are in the late stages of dementia who tell me that their loved ones are still able to go to the bathroom by themselves. However, after seeing their loved one in person – or through YouTube, Skype or Face Time – I can tell that there is no way that they are capable of going to the bathroom on their own.

I am talking about individuals who can barely get up from a chair, walk, or properly remove their clothing without assistance. The caregiver is eventually trained on what to look for. Constantly looking for the individual’s signs and clues that they need to use the bathroom can be exhausting. Yet still, caregivers do what I call “the toilet watch waltz.”

By remaining on high alert and getting their loved one to the bathroom on time, in their minds, their loved one is “technically” not declining. As long as they are “still going to the bathroom,” albeit, with the caregiver’s help, technically speaking they are still continent.

But deep down, we all know they are not.

Once you accept the fact that the person you love is changing, and that their capabilities change as they go through the different stages of dementia, it’s an eye opening experience.

No one, not you or the person that you are caring for would ever want to be in this situation. But this is where you both are. Helping your loved one each and every time they need to go, does not make them continent.

This just allows both of you to not only avoid accidents, but also avoid and deny the painful reality of what is happening. I see it everyday – denial and stages of dementia go hand in hand.

If the person that you are caring for accepts that diapers are now a necessity, that is often the first step to accepting both of your lives will be different. And in this case, once diapers are used, different is better.

If dealing with diapers, stages of dementia and incontinence, and denial were easy, this wouldn’t be such a common topic of conversation for caregivers. It will never be easy for either party involved. This is by far the most personal, and most intimate situation that you will ever have to deal with as a caregiver, and it is heart wrenching.

Whether you are a spouse caring for your significant other, or a child caring for a parent, this situation is often approached differently depending on the relationship. But regardless of your relationship, there is one unifying front that we can all agree upon. Diapers are meant for children, and trying to convince a grown adult that wearing them is a good idea is going to be an extremely difficult task.

Over the next few weeks, I will go further into detail about diapers and incontinence throughout the stages of dementia. Different stages will require different types of diapers.

If you think this piece will be helpful for another caregiver, please share. It could help someone more than you think. 

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Photo courtesy of David Shankbone

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