What I Learned About Lewy Body Dementia from my Dad

By: Judi Brownell

My dad taught physical education at a small private college.  He was the golf and wrestling coach for as long as I can remember.  It was the perfect position for someone who had been an athlete himself his whole life.   He and his 5-year-old older brother made money for their family by putting on boxing exhibitions during the depression and, later, he went on to win the state golden gloves championship.  He was an accomplished gymnast, star tennis player, and club champion at his home golf course.

It was in the summer of the year he turned 78 that my mother began to notice some changes; small things, at first.  He seemed less sure on his feet and would occasionally stumble or fall on uneven ground.  He dropped things and had trouble setting items back on the table.  As the months passed, other symptoms developed.  He would imagine he saw one of his students fall from the parallel bars or rings; he would run to catch them but somehow never reached them in time to prevent their fall.  His sadness and frustration following these episodes were heart-breaking.

He had tests. He spent time in a psychiatric ward at the local hospital.  Many doctors were dismissive and confused; they said it was Alzheimer’s and their only advice was to make sure he didn’t get over-stimulated.  During the following year, he became increasingly disoriented and had difficulty bringing food to his mouth; his confident walk turned into a continuous shuffle.  In a letter to his primary care doctor I wrote:

This is a follow-up to my father’s progressive dementia.  I wanted to let you know that during the winter his anxiety worsened and he occasionally had hallucinations.  Several times he did not recognize my mother.  He suffered from sleeplessness and his memory loss continued.  Within a few months, his behavior became more disturbing; he would wake at night, thinking my mother was seriously ill.  More frequently, he saw things that weren’t really there.  While he had been playing tennis and golf just a short time ago, he suddenly could not use silverware or judge the distance to sit in a chair. The situation has now become too much for my mother to handle alone.  We are in need of personalized, knowledgeable care.

As a last resort, my mom took him back to the hospital and, coincidently, a visiting geriatric specialist was on call.  She asked a series of questions and immediately changed his diagnosis from Alzheimer’s to Lewy Body Disease.  She explained that there were various types of dementia, each requiring different approaches and treatment plans. Unfortunately, many doctors don’t differentiate. She then put my dad on new, highly sensitive medications and explained the disease to my mother. That changed everything.

Lewy Body is a distinct form of progressive dementia that affects over one million individuals in the United States alone. Although there is no single test that conclusively diagnoses this form of dementia, the disease is associated with abnormal deposits of protein in the brain called Lewy bodies.  These deposits lead to plaques and tangles which cause changes to the brain.  This, in turn, creates problems with both mental and physical activities. While early Lewy Body dementia is often mistaken for Alzheimer’s or other disorders, its symptoms—especially in the later stages—are distinctive. My dad exhibited some of the most common characteristics; his visual and spatial abilities were impaired, and he had frequent visual hallucinations.  He also had movement problems associated with Parkinson’s disease such as a shuffling walk and muscle rigidity.  While there was memory loss, generally individuals with Lewy Body disease have a higher degree of memory function than those with Alzheimer’s.  Key differences between these two conditions are listed below:

Alzheimer’s vs Lewy Body Dementia

  • Memory loss is a less prominent symptom in the early stages of Lewy Body
  • Movement is more likely to cause disability early in Lewy Body dementia, creating problems with balance and walking
  • Lewy Body dementia often causes hallucinations and delusions
  • Lewy Body dementia disrupts the autonomic nervous system, increasing the potential for dizziness and falls

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Throughout his illness, dad maintained his sense of humor and good spirits.  I can’t recall a time that he didn’t recognize me when I came to visit.  Once we found the appropriate medications, we could develop a care plan that identified the daily activities most likely to keep him motivated and positive.  He loved to go for rides, watch sporting events, and even listen to current events.  Visits from family and friends were a highlight, and almost certain to elicit many stories and accompanying laughter.

As I reflect back on those times of uncertainty, I learned three important things:

  1. You need to find a compassionate caregiver who understands dementia and who will work with you to address the issues your loved one experiences. Different types of dementia have different symptoms and may require different approaches, so you need to identify someone who personalizes care and who can provide the assistance you need.

People are still confused about what Lewy Bodies is and how it compares to Alzheimer’s.  Many common drugs can make Lewy Body symptoms worse, and some are life-threatening.  It is important to find a care provider who can give you an accurate diagnosis and who takes a holistic approach.  A knowledgeable caregiver who understands dementia and who will partner with you in making difficult decisions is essential.

  1. Regardless of how much or how little you participate in caregiving for your loved one, you need to find time to take care of yourself. For eight years my mom’s focus was on taking care of dad’s needs.  While caregiving was rewarding because of dad’s positive responses, she didn’t go to the dentist, have her eyes checked for the new glasses she needed, or continue the yoga classes she once loved.  Her friends all worried about her physical and mental health because she always put my dad’s needs first.

For some, going out and having a good time when a loved one is lonely or suffering may elicit feelings of guilt.  There are few more stressful situations than having a family member with dementia.  That’s why it is important to be good to yourself and to stay healthy so that you are in the best position to support your loved one and provide the patience and daily guidance a person with dementia requires.

  1. Every individual with dementia is different; individualizing care plans is essential.

Quality of life for older adults is key, and those suffering from dementia are no different.  In order to help your loved one enjoy a variety of appropriate experiences, you need to consider his or her individual history, family background, interests, and level of function both physically and mentally.  In our case, identifying Lewy Body as the disease was the first step in creating a positive and appropriate care plan.  You can have a tremendous positive impact by tailoring daily activities to his or her specific needs and preferences, taking into account that you may need to accommodate unanticipated changes. Fortunately, my mom partnered with dad’s caregivers to tailor numerous activities to meet dad’s needs. Their efforts paid off, and his daily experiences were largely enjoyable and well-received.  Patience and flexibility are essential ingredients for a healthy relationship and a positive outcome.

You will also discover that some behaviors exhibited by those with dementia make communication particularly difficult.  Your loved one may suddenly become agitated and aggressive, or defiant, or demanding.  They may insist, as my father did before treatment, that they see things happening that cause them to be fearful or confused.  Those with Lewy Body, in particular, are prone to falls due to the Parkinsonian features of the disease. In such cases, it is imperative that those who care for your loved one understand dementia and respond in appropriate ways. Safety is always a concern and requires that you set some boundaries to protect your loved one.  There are also a number of specific communication skills you can learn and practice that will help de-escalate a difficult situation and help you build a positive and supportive relationship with your loved one.

Skill development takes time and practice, but developing new patterns of communication to effectively relate to your loved one with dementia is well worth the effort.  While specific behaviors may sound simple to implement, the context in which they are applied often challenges even the most experienced care givers. Although there are many types of response that are important to learn, when dad had hallucinations–or was insisting he needed something that was impossible to provide–we found two responses were particularly useful in making a connection; empathy and validation.

Empathy is the ability to recognize another person’s emotions and to understand the situation from their perspective.  It takes mindful, active listening and a willingness to focus on how your loved one is feeling as much as on the specific content of what they say.  In addition to communicating empathy, it’s also useful to practice validation—an approach that recognizes and accepts the other person’s reality without being judgmental.  This attitude and accompanying response reduces the risk of confrontation and can prevent a difficult situation from escalating.  We also found that asking questions can be constructive and productive.  When my dad would see sports equipment hanging from a tree, we didn’t immediately say, “What?  All that tree has are branches and leaves!”  Instead, my mom learned to go with the flow and not discount what dad was experiencing.  She might say something like, “Do you see any golf clubs on the tree?” or “Who do you think the equipment belongs to?”  Often, you may be able to redirect your loved one’s focus by helping them recall a time when they used that equipment or encouraging them to talk about a sporting event they attended.  There were even times when dad realized he was seeing things that no one else saw and began to respond to the situation with characteristic good humor, saying things like, “It’s a shame you don’t see that equipment because then we could play some golf together.”

There are numerous ways to provide exceptional care through the communication and caregiving choices you make.  Learning more about dementia and practicing new ways of responding strengthens your relationship with your loved one and makes your time together more enjoyable.  My mom and I learned a great deal during the years my dad had Lewy Body dementia and are grateful to those caregivers whose patience and generosity enabled us to understand and appreciate dad’s condition. Our journey was stressful, but in many ways, it brought us all closer together as we met and conquered new challenges.  Above all, a person with dementia thrives when caregivers provide kind and respectful communication that reassures them they are loved and valued.

One thought on “What I Learned About Lewy Body Dementia from my Dad”

  • What an excellent article! Thank you for explaining the aspects of Lewy Body Dementia (LBD) so well. With your permission, we will be happy to share this article on our website and on our social media pages.
    For others who made need additional information, we are here for them. We have the only live helpline in the country for LBD seven days a week from 8am to 8pm at 516-218-2026. We also have five New York support groups and a website full of information on the disease, on caregiving, on alternative therapies, and resources of physicians and many other topics. Thank you again for sharing your family’s story with others.
    Best,
    Norma Loeb
    Founder & Executive Director
    Lewy Body Dementia Resource Center
    http://www.lewybodyresourcecenter.org
    Helpline: 516-218-2026

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