There are four actions you can take to be an engaged Lewy body dementia (LBD) caregiver, which will help you cope throughout the LBD journey:
• Be positive
• Be proactive
• Be perceptive
• Be persistent
After someone close to you is diagnosed with LBD, you may be overwhelmed with negative emotions. These emotions are your first hurdle to overcome, and they tend to be ongoing. Making positive choices to overcome these negative feelings may serve you well.
There are a number of ways to address this choice of being positive. It takes self-discipline and commitment and often involves doing the opposite of what you are feeling in the moment. So first, identify that negative feeling. Then select a new perspective or activity that will move you in another direction. For example, if you feel sad, try to spend time with a friend who makes you laugh. If you feel empty, make a list of three things for which you are grateful.
These kinds of choices may feel simplistic and artificial when you first start to practice them. Over time, you will feel the benefit of not allowing the negative emotions to swamp you, keeping you in a slump of inactivity and helplessness. You will begin to feel empowered and purposeful in your role. Then you will realize that your positive choices have a profound impact on your loved one’s experience of LBD.
You need to take action and not just react to what happens. Being proactive is an ongoing requirement. As you begin to assume your role, these actions will empower you:
• Learn about LBD symptoms.
• Learn about treatments for LBD symptoms.
• Learn about non-pharmacological (non-drug) interventions for LBD.
• Learn to identify the specific triggers that affect the person with LBD.
• Connect with other LBD caregivers to continue strengthening yourself.
When LBD was diagnosed, you may have received some printed materials that defined LBD and directed you to some helpful resources available in your community. However, you will need to seek out more in-depth knowledge in order to fulfill your role as the caregiver.
Do not overwhelm yourself in the beginning. Learn about the basics and gradually add more knowledge. It is important to get information from reliable sources. Use only trusted print and non-print resources. Look at the websites of government agencies, universities, hospitals, and associations like The Lewy Body Dementia Association (LBDA). Find medical journals, articles, and books written by LBD experts and online support groups that offer reliable information and social support.
Be sensitive to the emotional and psychological impacts that LBD can have on you and your family. If left unaddressed, these things can have devastating physical consequences for you and the person with LBD. They may determine how difficult the LBD journey is for all of you. LBD is likely to magnify any pre-illness emotional and interpersonal issues. Therefore, it is important to clearly identify those and learn how to manage them better. Doing this could provide significantly better outcomes for everyone. Consider including a counselor as a member of your health care team to help you address communication issues that need attention, relationship dynamics, and any pre-illness issues that can affect how you manage the symptoms of LBD, forgiveness of past hurts, and coping skills for LBD symptom management.
Be sensitive to changes in LBD symptoms. You may see the person with LBD every day, unlike doctors who see him only for a short time during office visits. You need to observe and record changes in physical, psychological, and behavioral symptoms. Report these changes to the physician and work together to find solutions. Sometimes changes in medicine can bring about an improvement of symptoms. At other times, non-drug choices can address these issues.
Identify the specific triggers that negatively affect the person with LBD. This is where many non-drug interventions can have huge positive impacts on living daily with the disorder. Examples of simple changes with big impacts may be:
• Softening the light in the room
• Using oils like lavender to calm agitation
• Playing favorite music
• Having only one person speak at a time while in the room
• Explaining what you are about to do before you begin to do it
These may seem like small things, but they can make a big difference in the person’s quality of life.
Being a care partner, especially for a spouse with LBD, is a long-term commitment. It is a marathon, not a sprint.
The term Lewy roller coaster has been coined by caregivers to describe the experience due to the ups and downs in cognitive, physical, behavioral, and psychological symptoms. Your choice to be positive, proactive, and perceptive must be of a continuing, ongoing nature. You need to persist through these fluctuations as LBD progresses. It is a daily choice.
As new symptoms emerge, learn more about LBD and stay up to date about research and treatments that could be helpful. As your care continues, you will monitor disease symptoms daily. At times, you may question the efficacy of an intervention. Is it working or is it simply a manifestation of the fluctuations of the disease? This is a typical question for you to ask in your role as LBD care partner. Sometimes you will use your intuition correctly and change course. Other times you may not discover the answer. That is also typical, so do not blame yourself at these times.
You will also monitor others who are providing treatment and support to the person with LBD. Part of your role is to teach any new person on the health care team about the person with LBD, how the disease and certain situations affects them, and how to best approach the situations that arise in his care.
Your steadfast persistence will pay off for everyone. This is one of those places in life where you clearly will make a difference. It is not easy, but it is doable -- and it is worth it.
Source: Edited with permission from the free online booklet, Being an Engaged Care Partner, by Rosemary Dawson, Jeff Maruna, and Pat Snyder