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Lewy Body Dementia Caregiver Burnout: The Signs and How to Reduce or Eliminate It

by Lizabella Oak

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dementia caregiver burnout

Lewy Body Dementia caregiver burnout is real. As our population continues to age, more and more people are finding themselves in the role of caregiver for a loved one with Lewy Body Dementia (LBD). LBD is a degenerative brain disorder that often leads to dementia, and caregivers for patients with LBD often experience high levels of stress and anxiety. The constant demands of caregiving can lead to caregiver burnout, which can have serious consequences for both the caregiver and the care recipient.

As the Lewy Body Dementia Association notes, caregivers of people with Lewy Body Dementia (LBD) are at risk for burnout. One reason is that LBD can cause changes in behavior that are uncharacteristic of the person who has the disease.

dementia caregiver burnout
Caregiver burnout can lead to physical and mental health problems.

Caregivers are usually family members, such as a spouse or child, but can also be close friends. Caregivers often have many responsibilities, such as providing emotional support, helping with activities of daily living, and managing medications.

Caregiver burnout is common among caregivers of patients with Lewy Body Dementia. The caregiving role can be physically and emotionally demanding, and caregivers often feel isolated and overwhelmed. Caregiver burnout can lead to physical and mental health problems, and it is important for caregivers to identify the signs and seek support.

Signs of Lewy Body Dementia Caregiver Burnout

Anxiety and constant worrying about the future of yourself and your loved one. Let’s face it. With Lewy Body Dementia caregiver burnout there is a lot of anxiety involved. What will the future hold? Will you need to ever place your loved one in a memory care facility, assisted living, or nursing home? How will you financially handle it? How will you go on without your loved one? Will you be able to provide everything your loved one will need in the future? Can you handle bathroom activities? It’s all overwhelming.

Fear that you have made a costly mistake in choosing your loved one’s care provider. You might be worried that you’ve chosen the wrong home health aide or outside caregiver. Did you choose the right facility for placement? Lewy Body Dementia comes with its own issues in finding the right care. This problem absolutely contributes to Lewy Body Dementia caregiver burnout.

Becoming uncharacteristically impatient, irritable, or argumentative with your loved one or with others or becoming angry or resentful. These feelings are normal and understandable. However, it is important for caregivers to recognize them and take steps to prevent burnout.

Problems with sleeping patterns — either too little or too much. It is not uncommon for LBD patients to be up all hours of the night. They may need to urinate frequently and be confused. Problems with balance and coordination can result in stumbling or falling and you want to monitor your LO getting up. That means you, the caregiver, are up too and then still have to do your normal activities during the daytime. It can be exhausting.

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Not taking care of your own psychological and physical needs. If you are a caregiver, you may be so focused on taking care of someone else that you neglect your own needs. This can lead to neglecting your own needs, which can make it difficult to continue providing care. You might skip doctor appointments, quit exercising, stop taking supplements, or discontinue going to your therapist.

Gaining or losing weight and changing your eating habits. This can manifest in not even wanting to eat at all to wanting to eat all of the time. You might not even notice but the scale might be a signal that you are experiencing Lewy Body Dementia caregiver burnout.

Having a hard time dealing with everyday things. Do things that never bothered you before suddenly cause you to be very aggravated and uneasy? It might be something like someone leaving the lights on in a room or becoming upset about having to wait in line at the grocery store.

Not participating in activities that you used to enjoy. Sometimes caregivers get so overwhelmed with caring for their loved ones that there isn’t enough time in the day to do activities that they once loved doing. Depression can also make you withdraw from those things. You might stop going out with friends, quit sports activities, or stop going to church.

Feeling like caregiving has taken over your life. Oftentimes, the reality is that it has taken over your life. There aren’t enough hours in the day to accomplish all that needs to be done. Not having any help can easily cause caregiver burnout.

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Frequent migraines, stomach problems, or other physical ailments. If you’re dealing with these things it could be a sign that you are burned out. Burnout can rear its head in more ways than emotionally. Physical symptoms can be aggravated or prolonged by anxiety.

Abusing drugs (even prescription drugs) or alcohol. The tension of your life as a caregiver can make you susceptible to substance abuse issues. As a caregiver, perhaps you began with a little glass of wine each night to wind down; now you like to drink till you fall asleep. Maybe you’ve began consuming your loved one’s medication. Before you know it, you’ve developed a substance abuse problem that is interfering with your ability to make good decisions – for yourself as well as for the person in your care.

How to Reduce or Avoid Caregiver Burnout

There is no denying that caring for a person with Lewy Body Dementia (or any dementia) is hard work.Burnout can lead to physical and emotional exhaustion, depression, anxiety, and even thoughts of suicide. If steps are not taken to avoid or remove the causes of the burnout there can be serious consequences.

So how can you prevent yourself from getting burned out?

Join a support group. There are all kinds of support groups, in person, online, video chats, and phone calls. If it is difficult to get out of the house and away from your caregiver duties, there are some very active groups on social media. Do a search in Facebook for ‘Lewy Body Dementia Support Groups’ and you will get several results. The LBDA has its own support groups too, you can find a list of them here. If your loved one is a Veteran their caregiver support has monthly video chat/phone support calls. Ask your Veteran’s social worker for more information.

Ask for help. No one should have to go through the challenges of taking care of a loved one alone. It can be difficult to ask for help, but it is important to remember that you are not alone in this. There are people who care about you and want to help. Asking for help does not mean that you are weak or incapable. It simply means that you need a break. Everyone needs a break sometimes, and there is nothing wrong with asking for help.

You can ask a friend or family member to sit with your loved one while you take a walk or meditate. You can also hire a professional caregiver to give you a break from time to time. Don’t be afraid to ask for help when taking care of your loved one.

Accept help. Yes, this is different than the above “ask for help”. Have there been times that a friend or family member has said they can help. Sometimes it is easy to say “no thanks” or not take them seriously. Or you think accepting help means you are not good enough. When they offer to help, say yes!

Have a sense of humor. Your day is filled with chores and attentiveness to your loved one. Don’t forget to be able to laugh at things. As caregivers of people with dementia, we run across them having delusions and hallucinations. Some of them are very serious but some are downright humorous and it is OK to laugh and find the humor in them. Dementia caregiver burnout can most definitely benefit from some laughter.

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Recognize your true situation and know your limits. Be realistic in your assessments of your own situation. Is it too much for you? Are there certain things in your caregiving that you can’t graciously handle? Some people have phobias about mucus or can’t stomach dealing with cleaning up urine or bowel movements. It’s not unusual and everyone has their limit. It doesn’t matter if yours is different than someone else’s. Even if you have always wanted to keep your loved one at home it doesn’t mean that you can’t realize there might be a better way for all of you.

Take time for yourself. Easier said than done, you say? It’s true that a caregiver’s day is often very busy. Even if it is just 15 minutes while your loved one is sleeping, take advantage of that time by meditating, listening to music, reading a novel, or a quick cat nap. If you have a longer length of time, go for a massage, a lunch with friends, take a walk, go shopping for just you, take a drive, take a yoga class, or do anything that brings you joy and peace.

Talk to a therapist. If you’re feeling overwhelmed, exhausted, or like you’re just not doing your best, it may be time to talk to a therapist. A therapist can help you manage your stress, find ways to cope with difficult situations, and develop a support system. Therapy can be an invaluable tool for caregivers. It can help you feel better prepared to handle the challenges of caregiving and make sure that you are taking care of yourself, too.

Use respite care services. This can give you a break from your caregiver duties. Your local Area Agencies on Aging have respite programs that can help. Do an internet search with the name of your county and “area agency on aging”. If you are caretaking for someone who is a Veteran, they have respite programs too. Contact your Veteran’s social worker. You can also privately pay an agency to send an aide to your residence.

Eat healthy food and get exercise. A recent study shows that sufficient physical activity and a healthy diet is vital in reducing health risks from many causes. If you’re not feeling your best, eating healthy food and getting exercise can help. Plus, if you’re not healthy, it can be harder to be there for them when they need you.

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Adult day programs. Many caregivers have found adult day programs to be a wonderful way of giving them respite. But these programs can also do wonders for a person with dementia. Many programs do games that help with their cognition, have exercise time, play fun games, and provide socialization. Some of them provide transportation to and from the location.

In conclusion, Lewy Body Dementia caregiver burnout is a real and serious problem. It can be caused by a number of factors, including the stress of caregiving, lack of support, and unrealistic expectations. There are a number of things that caregivers can do to reduce or eliminate burnout, such as taking breaks, getting support from others, and setting realistic goals. There are also a number of resources available to help caregivers deal with burnout.

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