Dementia Caregiving: A Complete Guide to Caregivers

Dementia Caregiving

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Dementia caregiving can be frustrating and hard at times, but you can better help your loved one as they live with dementia with these tips and tricks. 

What Is Dementia?

Dementia is a term that is used to describe the mental decline of an individual whose symptoms interfere with their day-to-day life. Dementia is not a specific disease. It is a group of symptoms caused by other illnesses that affect thinking, memory, reasoning, mood, and behavior.

Dementia usually develops in the elderly over the age of 65. It is known as a late-life disease. There are several different types of dementia. The most common type of dementia is Alzheimer’s Disease

Symptoms vary based on the type of dementia you are diagnosed with. Symptoms may include:

  • Memory issues
  • Asking the same question multiple times / not remembering they asked it
  • Struggling to find the right word to say or understand words
  • Feeling out of sorts / confused in a place that is unfamiliar
  • Struggling with money and numbers
  • Anxiety
  • Struggles planning or carrying out various tasks
  • Changes moods quickly
  • Changes in personality or behavior
  • Trouble sleeping
  • Becomes more obsessed with certain things

Since dementia is a progressive disease, the symptoms will worsen over time. 

After your loved one is diagnosed with dementia, they may require help doing daily tasks from time to time. Over time your loved one will need more and more support from a caregiver. 

What Is Known About Caregiving For A Person With Dementia?

Typically, those living with Dementia or Alzheimer’s Disease are cared for by family members or close friends. Most of these individuals are cared for in their own homes. It is estimated that 16 million Americans spend more than 17 billion hours of unbilled care for their loved ones. 

Approximately ⅔ of caregivers for loved ones living with dementia are women. ⅓ of these caregivers are over the age of 65, ¼ of them are caring for their elderly parents and their children under the age of 18. 

Caregivers of those living with dementia provide care for their loved ones for at least four years. 60% of these individuals expect to continue to help with care for at least five more years to their loved ones. 

Those who are caregivers to loved ones living with dementia are more at risk for developing anxiety, depression, and have a poorer quality of life because of the demands caretaking puts on them. 

Dementia Caregiving: Understanding Dementia Behaviors

Dementia can cause mood swings and changes in behaviors. There are many challenges when it comes to understanding and handling dementia behaviors. Individuals who are living with dementia have a more difficult time remembering things, thinking clearly, and communicating with others. They struggle to take care of themselves and do day-to-day activities. These tips can help you communicate with those living with dementia and how to handle dementia behaviors. 

Communicating With Your Loved One Who Is Living With Dementia

COMMUNICATING WITH YOUR LOVED ONE WHO IS LIVING WITH DEMENTIA

While it may be more challenging to communicate with those who are living with dementia, these tips and strategies can help you develop good communication skills when communicating with your loved one. 

1. Have a Positive Attitude

Your attitude sets the tone for your communication with your loved one who is living with dementia. Use positive facial expressions, a good tone of voice, and physical touch to know that you love them and want to help them as well as communicate with them. 

2. Limit Distractions

When trying to communicate with your loved one, limit the distractions. Turn off the TV or close the door if many things are happening around you. Before you begin to talk with your loved one who is living with dementia, make sure you get their attention. This can be by calling them by name, a light touch on the arm, or sitting next to them and getting them to have eye contact with you. While you are talking, maintain eye contact with them. 

3. Be Clear

When talking with your loved one, speak slowly, in short, simple sentences. Do not jump from one topic to another. 

4. Simple Questions

Be sure to ask questions your loved one can answer. These should be simple close ended questions that they can answer yes or no to. Try to avoid open-ended questions as this will cause confusion. 

5. Listen With Your Whole Body

While it is easy to just listen with your ears, when communicating with your loved one, communicate with your eyes, ears, and heart. Try to understand their feelings among the words they are speaking. 

6. Break Down Tasks and Ideas

Your loved one can get easily overwhelmed when asked to do things that require multiple steps. Break down the task into giving them verbal cues one step at a time. 

7. Redirect

There are times when your loved one will become frustrated and irritated. Try and redirect them to something that makes them happy. Try even holding their hand or hugging them to know that they are loved. 

8. Give Affection and Reassurance

Confusion is a symptom of dementia. Your loved one will often feel anxious and unsure of themselves. Try to avoid proving them wrong or fixing what they are saying. Give them love and support.

9. Share Memories

Those who are living with dementia love to think about the past. This is usually a very comforting activity that they love to do. These are generally very happy memories to them. 

10. Laugh

When things get hard, just laugh. Those who are living with dementia usually love to laugh, so if you begin to laugh about a situation, they will usually join in with you fairly quickly. 

How To Handle Dementia Behavior Changes?

As a dementia caregiver, one of your biggest challenges in caring for your loved one is when your loved one is experiencing behavioral and personality changes. It is essential to have a sense of humor when helping your loved one when they are going through behavior changes. 

Keep these tips in mind. 

  • Remember, you cannot change the person. Your loved one has a brain disease that is causing these behavior changes. 
  • If behavior changes appear suddenly, consult your loved one’s doctor to make sure other medical conditions are not present. 
  • Try to understand what could be causing the behavior. Those who are living with dementia cannot always tell you what they need/ want. They may be trying to fulfill a need. Try to understand what that need is and adapt to it. 
  • Avoid triggers. Often behaviors are triggered by certain things. It could be a change in environment or schedule. When changes need to occur, try to help them through these challenges. 
  • Be adaptable. Adapt to different situations and ways to help our loved ones through their behavior symptoms caused by dementia. When you find one thing that works, don’t expect it to work every single time. 

Helping Your Loved One Through Other Behavior Symptoms

HELPING YOUR LOVED ONE THROUGH OTHER BEHAVIOR SYMPTOMS OF DEMENTIA

#1. Wandering

Individuals who are living with dementia may wander for many reasons. These may be out of boredom, effects of medications, restlessness, or trying to fulfill a need. It is important to try and pinpoint why your loved one is wandering to help them. 

Try these tips to help limit wandering.

  • Help your loved one living with dementia exercise daily to help with restlessness. 
  • Install new locks if needed. Be sure that all family members know-how and can unlock them to ensure the safety of everyone in the house. 
  • Place a picture of a stop sign at the door to help remind them not to go outside without a friend going with them. 
  • Placing a black mat on your front door may set the appearance of something that cannot be crossed to those living with dementia. 
  • Install a home security system or gps monitoring system to keep your loved one safe. 
  • Keep things like coats and wallets put away. With some items, those who are living with dementia will not leave without certain things. 
  • Tell the neighbor that your loved one tends to wander, so if they see them, they can call you to let you know.

#2. Incontinence

Bladder incontinence is a symptom as dementia progresses. You never want your loved one to feel embarrassed if they have an accident. Try these helpful tips to help if your loved one struggles with incontinence caused by dementia. 

  • Establish a bathroom routine. Remind your loved one who is living with dementia to try and use the bathroom every couple of hours. 
  • Use incontinence pads if needed to help with leakage. 
  • Use easy-to-remove clothing so that it is easy to remove and machine washable.

#3. Helping Your Loved One With Irritation

Irritation and agitation usually appear in your loved one in any stage of their dementia. A variety of things can make your loved one irritated. These include fears, being tired, and environmental factors. These tips can be used to help with the irritation of your loved one. 

  • Reduce noise and clutter in rooms. 
  • Stick to a routine. 
  • Reduce caffeine and sugar, and other foods that cause spikes in energy. 
  • Use physical touch and a reassuring voice. 
  • Let your loved one who is living with dementia be as independent as possible as long as it doesn’t pose a safety concern.. 
  • Distract and redirect when possible.

#4. Helping Your Loved One With Repetitive Speech and Actions

Often, individuals who are living with dementia repeat themselves. While this is harmless, the caregiver might find it frustrating. Follow these tips to help with your loved one and their repetitive speech. 

  • Give them reassurance. 
  • Do not remind them that they have already asked that question. 
  • Place signs around the house to remind them when specific activities will occur. For instance, what time dinner is or their favorite show they like to watch.

#5. Helping Your Loved One With Paranoia 

It is hard to see your loved one become paranoid. It is important to remember that this is their dementia. It is also important to remember that their paranoia is real to them. Do not argue or disagree with them regarding their paranoid thoughts. These tips can help your loved ones who are living with paranoia. 

  • If your loved one living with dementia thinks that money is missing, give them a small coin purse that can hold a little bit of money so they can check it often. 
  • If they think something is missing, allow them to look for it. Once you have looked a bit, try and distract them with other activities. 

#6. Helping Your Loved One With Sleeplessness

Those who are living with dementia often feel restless, agitated, and disoriented. Studies show that at night these symptoms increase. This is known as sundowning. Try these tips to help your loved one with sleeplessness. 

  • Increase physical activity throughout the day and limit napping. 
  • Limit caffeine and sugar. 
  • Plan for the quiet evenings that have a planned activity. 
  • Turn lights on in the home before it gets dark. Once it is dark, be sure to keep lights on throughout the house. 
  • As a last resort, talk with your loved one’s doctor to see if medication is an option. 

#7. Helping Your Loved One with Nutrition

One of your responsibilities as a dementia caregiver is to ensure your loved one is getting enough nutritious foods. Those who are living with dementia tend to forget to eat and drink. Not only that, but medications and dental issues can cause your loved one not to want to eat. This will lead to weight loss, bladder issues, disorientation, and weakness. These tips can help with your loved one when it comes to nutrition. 

  • Schedule mealtime and snack time into your loved one’s day. 
  • Make mealtime special. Let everyone gather around the table together. 
  • Let your loved one perform as much as they can on their own, then assist as needed.
  • Prepare foods that are easy for your loved one to eat. 
  • Plan foods high in calories if your loved one is losing weight.

#8. Helping Your Loved One With Bathing

Individuals living with dementia struggle to remember to have good hygiene. This includes brushing teeth and hair, bathing, and changing their clothes. These hygiene tips can help you when it comes to helping your loved one. 

  • What was your loved one’s hygiene routine? Did they shower daily? Take showers or baths? Would they get their hair washed at the salon? Did they have a scent they always wore? Try to do these same things when possible to help them feel comfortable. 
  • Be aware of the temperatures of the room and the water. Make sure they are comfortable. Installing a hand-held shower and shower seat might be helpful for your loved one. 
  • Never leave your loved one unattended in the shower. Bathing poses a considerable fall risk. 
  • If washing your loved one’s hair is difficult, do it once a week and rely on dry shampoo. 

#9. Helping Your Loved One With Other Dementia-related Symptoms

  • Dressing is tricky for those who are living with dementia. Choose clothing that is easy to wear and that is loose-fitting.
  • Your loved one may have some inappropriate sexual behaviors. Remind yourself this is dementia, not your loved one. 
  • If verbal outbursts occur, stay calm, react with love, and try to redirect them. 

How To Handle The Stresses of Caregiving?

HOW TO HANDLE THE STRESSES OF DEMENTIA CAREGIVERS?

It can be a challenge to those who are caring for those who are living with dementia. It is normal to feel frustrated and overwhelmed when you are caring for your loved ones. 

When you feel the stresses of caretaking, it is essential to recognize what is in your control to change and what is not. 

Often times,  frustration arises when we try to change something that is uncontrollable. You cannot change the behavior of an individual who is living with dementia. The sooner we as caretakers learn to cope with this it will help relieve undue stress and frustration. Things that will help this is the following:

  • Recognize the warning signs of frustration
  • Find ways to calm yourself down. 
  • Change your thoughts to help reduce stress and not add to it. 
  • Try not to jump to conclusions. 
  • Learn to communicate effectively with your loved one. 
  • Don’t be afraid to ask for help. 
  • YOU TIME

#1. Recognizing Frustrations

When you are caregiving for a  loved one that has dementia, you must recognize your frustrations by looking for warning signs. When these appear, you can take a few minutes to calm yourself down before you lose control of the situation. Some of these warning signs include the following:

  • Knot in throat
  • Chest Pains
  • Headache
  • Shortness of breath
  • Eating more than usual.
  • Increase in alcohol consumption
  • Lower levels of patience
  • Shortness of breath

#2. Calming Techniques

When these warning signs appear, you will want to calm yourself down as quickly as possible. This will help you look at the situation in a better light and respond to it appropriately. These are some examples of what you can do to try and calm down to relieve frustration. 

  • Try to count to 10 slowly. Take deep breaths in between. While it might seem silly, take dragon breaths. These will help you breathe deeply with every breath that you take. 
  • If it is safe to leave your loved one alone, walk into another room and take a moment to calm down and collect your thoughts. It is best to say you need a break to gather your thoughts rather than to lash out and do something you will regret. 
  • Go and meditate
  • Sing a favorite song in your head or out loud that calms you. 
  • Take a bath if you can. 
  • Go sit in a quiet room and just breathe. 
  • Yoga.

Try different techniques that will help you calm yourself down when you become frustrated when you are caregiving for others. 

It is recommended that as a dementia caregiver that you take at least 10 minutes to practice deep breathing and calming techniques. By doing this, when frustrating situations arise, you can handle them appropriately.

#3. Changing Your Thoughts

Your thoughts often dictate how you feel about certain situations. As you process the situation in your mind, try and change your thoughts by rethinking the situation to help reduce the amount of stress and frustration you are feeling. As you begin to change your thoughts, situations will become less frustrating and easier to manage over time. 

There are six unhelpful thought patterns in human behavior, especially in those who are dementia caregivers. Changing these thought patterns and creating adaptive responses can be a huge component in reducing frustration. 

Overgeneralization

Overgeneralization is when you take one poor situation or characteristic and multiply it ten or one hundredfold. For example, if you are at the pharmacy trying to pick up your loved one dementia medication and they are not ready yet, you then think, “This always happens!”

Adaptive Response: This does not always happen. Most of the time, I am in and out with the medication. Just this time, it is not how I would like it to be. 

Overlooking the Good

It is human nature to overlook the good, especially in ourselves. We may not allow ourselves to think we are doing a good job caring for our loved ones because we could be doing better, or we think someone else can do it better than we can. 

Adaptive Response: Caregiving is not easy. I am not perfect, but I am doing my best to take care of my loved one who is living with dementia. 

#4. Jumping to Conclusions

It is easy to jump to conclusions without all the facts. We do this by mindreading as well as fortune-telling. Let me provide an example of both. 

1. Mindreading

We assume the worst every single time. If your family member does not call you back, we assume that they don’t like us, ignore us, or just don’t like us anymore.

Adaptive Response: I am not sure what is happening in my family member’s life. Perhaps they are busy and did not get the message. If I’m bothered they did not respond, I should check on them and make sure they are okay, and ask them their thoughts.

2. Fortune-Telling

This is when you predict a negative outcome of the future. For example, maybe you are hesitant to let your loved one engage in an appropriate activity because you think they won’t like it.

Adaptive Response: I do not know the future. While I am sure they probably won’t like it, I should let them go and try it to make sure, who knows, they may actually like it. 

3. Should

Should is a conflict between what you want to do and what you feel like you have to do. “I should stay up and fold the laundry, so mom will not complain she has no clothes in the morning.” “I should ask mom what she wants to eat tonight, or else she will complain.” When we use these should statements when we care for our loved ones living with dementia end up with feelings of guilt, frustration and we are usually depressed. 

Adaptive Response: I would like to eat spaghetti tonight. It’s okay. I will make a meal that I love from time to time. I would like to get a good night’s sleep tonight, maybe I will fold clothes in the morning while mom has her morning coffee, and we can talk. She always likes to talk in the morning. 

4. Labeling

When we identify ourselves or others with characteristics or actions, we are labeling. For example, if we get take out, we think to ourselves that we are too lazy to cook dinner. 

Adaptive Response: I am not lazy; sometimes, I just don’t feel like cooking, which is okay. It does not mean I am lazy. I am doing the best I can, and I worked hard. I can take a break from cooking tonight. 

5. Personalizing

You take everything personally. If your loved one gets sick, you blame yourself that you should have protected them more from the illness. 

Adaptive Response: My loved one living with dementia is more susceptible to illness. I am doing the best I can to protect her from illnesses. 

#5. Communicate Effectively With Your Loved One

Good communication reduces frustration. It helps others understand your needs, limits, and desires. When you choose not to communicate effectively, you keep it bottled up inside, which causes passive-aggressive communication out of frustration. 

We help others understand our needs and desires through effective communication while also respecting their needs and desires. 

Here are some key points of effective communication with the loved one you are caring for. 

  • Respect yourself, including your thoughts, feelings, needs, and desires. 
  • Stand up for your feelings without degrading the other person. 
  • Use I statements in communication. Be sure not to blame your loved one who is living with dementia.
  • Avoid Should statements. 

#6. Ask for Help 

As someone who is providing care for an individual living with dementia, you must ask for help when you need it. Talk with friends and family members who can also lend a hand in helping your loved one. Others will not realize you need help if you do not share with them about the situation. Do not feel like you are failing when you ask others to chip in and help. 

Saying Yes

When someone offers help, say yes! Do not respond maybe or another time. Let them help right then. If they can help tend to your loved one, let them and you go run errands or have “me time.” 

Others want to help you. Sometimes they just don’t know how to help you. If they cannot tend to your loved one, give them a list of tasks or errands that they can help with to lift your burden. 

Saying No

Dementia caregiving, at times, can seem like a full-time job. We are pulled a million different directions, and the demands are a lot. Learn to say no when you are overwhelmed and need a break. Say no without feeling guilty for doing it. 

#7. Self Care

As a caregiver, you will often feel tired and overwhelmed. It is easy to forget about taking care of yourself when you are trying to take care of everyone. It is vital that you follow these steps to help prevent added frustration by forgetting to take care of yourself. 

1. Make Time

While you may start to feel guilty, carve out some time each day for yourself. This can be to rest, socialize with friends, or go do something fun. You deserve time to exercise and enjoy the fresh air outside. 

Get in touch with your healthcare provider and find out if your loved one who is living with dementia qualifies for respite service. They provide in-home help, adult daycare, and other activities that can get you the much-needed break you need. 

2. Take Care of You

You must take care of yourself. This includes eating well, exercising, getting the sleep you need, and attending your own medical appointments. 

Often when you do not take care of yourself, this is when you are more prone to illness, have increased depression and anxiety, and become more frustrated at situations you cannot control. 

3. Find Support

It is important to share your feelings with others when you are caring for someone who is living with dementia. This can be a church leader, a support group, other caregivers, a best friend, or a counselor. 

Talking about how you are feeling and getting advice about the situation can help you maintain a positive outlook.  

Planning For The Future: Tips For Caregivers

There will come a time when your loved one living with dementia will no longer be able to make decisions for themself. This can be very stressful for the caretaker. It is vital to have a plan and a health care directive in place. To help plan, talk with your loved one about the following. 

  • Begin the conversations early in your loved one’s diagnosis. This allows your loved one to be involved in their future. 
  • Get permission from your loved one living with dementia to talk to their healthcare providers and lawyers. You may have billing questions, insurance questions, or medication questions, and the offices cannot give you the information you need without consent. 
  • Consider the future with your loved one. What do they want to do financially? Do they want to stay in the home as long as possible? What do they want to happen at their funeral? All these questions will help with future planning. 

References

https://www.cdc.gov/aging/caregiving/alzheimer.htm

https://www.caregiver.org/resource/dementia-caregiving-and-controlling-frustration/

https://www.caregiver.org/resource/caregivers-guide-understanding-dementia-behaviors/

https://www.alzheimers.gov/life-with-dementia/tips-caregivers

https://www.alzheimers.gov/life-with-dementia/tips-caregivers

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