“At 2:30 in the morning, my husband Ralph would take the keys, walk out of the house, leave the door unlocked, get in the car, and start the engine. Then he would sit in the driveway, unable to remember what had happened. I was so afraid that he would not only hurt himself but perhaps someone else in the process. It was impossible to watch him all the time. It was exhausting!” - Janie
“My mother Eloise would often forget to perform her hygiene and change her clothes. Once I realized that she needed assistance, I tried to help her. She would become extremely combative. There were a few times I can recall being injured pretty badly due to her not understanding that I was only trying to help her.” -Pam
“My husband Robert would be fine one minute, and the next thing you know, he’s yelling at one of our sons because he doesn’t recognize him. He would begin shouting angrily about disagreements he had with people over 30 years ago, thinking he was in a heated debate with those individuals. It devastated us when we saw what was happening to him.” -Ann
"Ezekiel and I had been married for 59 years. It broke my heart to place him in a healthcare facility that specialized in treating dementia patients because I could no longer care for him. One day, I went to visit him. He was sitting in the foyer, holding hands with another woman who was also a resident at this facility. I sat down right beside him. They both sat there holding hands. He turned, looked right at me, and then looked away. He didn’t even recognize me, his wife. He had no idea how much that ripped my heart in two. It was like I had never existed.” -Rhonda
A global concern
These are just a few examples of what some have to endure when they have a loved one who is suffering from dementia. According to the World Health Organization, over 55 million people throughout the world suffer from some sort type of dementia, at varying stages. Nearly everyone you encounter will know of a person or have had a personal experience with someone, who has this debilitating disease.
At the same time, some are not familiar with this condition. What kind of an effect can this have on a person's life?
What exactly is dementia?
Dementia is a brain disorder that causes a person to lose the ability to function in a normal way. The person suffering from this condition may develop severe memory problems. Their ability to make clear, logical decisions and use sound reasoning, diminishes greatly. They may begin to have difficulty understanding simple things. Everyday tasks that may have been routine to them may now be confusing. Not only can they forget what they want to say, but the ability to speak and form complete thoughts and sentences is impaired drastically.
Dementia and how it affects the human mind
So, what does this look like? A person experiencing dementia can have difficulty understanding the difference between true and false, real and unreal. This may cause a person to speak harshly to those they love dearly. There may be an inability to manage their feelings. Emotions may change rapidly. Responses made may be inappropriate to the time, place, and situation. This person may not be able to decipher when they are in danger. For this reason, safety is the number one concern for these individuals. A few examples of what this may entail could be as follows:
Forgetting how to feed themselves or forget to eat altogether.
Getting lost in well-known areas, such as a neighborhood lived in for years. This could happen even within their own home.
Forgetting how to carry out small tasks such as brushing their teeth or writing a note with pen and paper.
Having problems with names and dates that are of significance to them.
The ability to focus for any length of time may be completely inhibited.
Your loved one has dementia. What does this mean for you and your family?
Dealing with the effects of dementia from the point of view of a loved one can be emotionally taxing. It may feel as if you are watching someone you once knew so well, turn into a different person, with a changed personality, right before your eyes. Tough decisions about their care will need to be made. Who will care for them? How long will this last? What can I do to help? What type of long-term support will they require?
At this point, the family will have essentially two options: whether to care for this person in the home or find a proper facility to place them in for continued care. With the rising costs of healthcare, and more people working from home, many people are opting to care for their dear ones with dementia right at home. Ultimately, the only “right” decision is the one that works best for your family and your circumstances.
If you have decided to take care of your loved one at home, please understand that this is a big responsibility that is being undertaken. It is a decision that will require great thought and preparation. Many resources can be tapped into, to assist your family with this decision. So, what are the key elements of making this transition to home care, a successful endeavor?
Key factors to make caring for a person with dementia at home successful.
Much preparation will be required to make this new arrangement as smooth as possible. Participation from everyone in the household will be essential. This includes all family members that could be of assistance. Here is a list of those key factors.
When making arrangements for a person with dementia, safety is the number one concern.
Ensure all doors and windows have robust locks in place. If your home still needs to be equipped with these, many hardware stores have bolts and locks that may be installed higher than eye level. If the lock is not in the eyesight, they may not attempt to open it.
Always have a companion with them. People with dementia tend to wander frequently. They like to walk, perhaps more than they may have done previously. If permissible, a walk in the park can be beneficial for them. Ensure they do not wander off into the street alone. A person with severe dementia may have a misconception of true reality. They may believe that they are still walking in that same park. In reality, they may have wandered into the street in the path of oncoming traffic, unable to recognize the danger.
Dress them in simple clothes. Buttons, cuff links, zippers, neckties, shoelaces, ribbons, belt buckles, suspenders, and anything requiring dexterity may frustrate them. Loose-fitting clothing is also helpful, as they may become agitated by restrictive garments, yet unable to voice their discomfort. Strive to find clothing that is easy to put on and remove. This would include items that are pull-overs, and pants that can be stepped into, and pulled up. Dresses and skirts can also be pulled over the head. Shoes that have Velcro closures, or can be stepped into, are also preferred. Shoes with heels, chunky soles, or wedges are not recommended.
Cut their food into smaller pieces, or blend into a purée. This may be required later on if symptoms advance. The ability to eat may become more difficult. Foods that are easy to chew or swallow may simplify meal times. With advanced dementia, appetite decreases greatly. The desire to consume a steak dinner, may not be present, even if that was their favorite meal. Finger foods can also be useful.
Give them plastic or rubber utensils to eat with. Eventually, this person may lose the ability to use a fork or knife. They may try to use the butter knife as a fork, causing serious injury.
Keep wall calendars, clocks, and appropriate lighting around the home to re-orient them to time, person, and place. People with dementia will frequently lose sight of time. They may wake up from a sound sleep believing it is a particular time, which can add to their confusion. Reorienting will help them understand when it is daytime vs. the middle of the night. Constantly showing them a calendar with the current month and year can be helpful.
Give them an ID tag, bracelet, or necklace. The likelihood that a person with dementia may wander off is extremely high. If this happens, they will have a visible ID that may help the local authorities or others relocate them. They may not remember their name or address. If someone in the household is an iPhone user, something like an AirTag placed on the inside of their shoes, may also be useful in locating their exact location.
Keep the same routine. As much as possible, keeping the person with dementia on a consistent schedule can decrease confusion. Repetitive tasks may become easier for them over time. You may find they begin repeating tasks from old routines years past. Keeping things consistent will decrease frustration for both the person and the family. This includes using the same caregivers as much as feasibly possible.
Keep sharp items hidden away. This could include keeping everything from kitchen knives, scissors, garden tools, small kitchen appliances, and other household items out of reach. A person with dementia may unintentionally hurt themselves or someone else, by trying to do something as simple as cut a vegetable. Was there a time when they were responsible for making dinner or cutting the grass? Keeping such items out of sight or locked away may be a major protection for them. In addition to keeping items locked away, this may be necessary for household chemicals too.
Place alarms or speakers on the doors and windows. Some security systems will announce “front door open”, or “motion detected at the back door”. Various security devices can alert others in the house when an attempt to leave is made. Some of these systems may require visual security cameras, which can also be beneficial.
Go along with their perception of reality only if it's safe. Sometimes, a person may have an altered perception of reality. If they believe this is 1945, and they're a teenager, indulge them for a while. This method can sometimes prove effective in keeping them calm and avoiding any outburst, or fits of anger.
Keep rugs, electric cords, and other items that can present as fall hazards at bay. Such items can cause one to lose their balance, causing injury, as they may not be aware of these hazards themselves.
As a family member looking after someone with advancing dementia, you can prepare yourself by knowing that there will be some good days and some bad.
People with dementia can become aggressive, even combative. If it happens, it may result from not understanding what is happening and why. Multiple occurrences like this may cause them to become fearful and untrusting towards people. This is especially true if they can’t remember who you are.
Before engaging in any activity with them, please slowly, and carefully, explain what you are about to do. Describe where you are going, what will happen, and why. If they become angry or even violent, step away. Tell them you will give them space while ensuring they are safe. If they are coherent enough, ask them their opinion.
With understanding and patience, you may come away from this experience with a new perspective on this condition and how it affects everyone involved.
Sources:
1.
World Health Organization. World Health Organization. Who.int. Published 2023. https://www.who.int/
2.
Centers for Disease Control and Prevention. What Is dementia? Centers for Disease Control and Prevention. Published April 5, 2019. https://www.cdc.gov/aging/dementia/index.html
3.
Alzheimers.gov. Tips for Caregivers and Families of People With Dementia. www.nia.nih.gov. Published 2023. https://www.alzheimers.gov/life-with-dementia/tips-caregivers
4.
Logan B. Caregiver’s Guide to Understanding Dementia Behaviors. Family Caregiver Alliance. Published 2016. https://www.caregiver.org/resource/caregivers-guide-understanding-dementia-behaviors/
Assessed and Endorsed by the MedReport Medical Review Board