“Caring for Someone with Lewy Body Dementia” – Live Chat Notes

Recently, Home Instead Senior Care hosted a conversation with Angela Taylor, Director of Programs for the Lewy Body Dementia Association (lbda.org). She provided a brief summary of what distinguishes Lewy Body Dementia (LBD) from some other dementias, followed by a lengthy question and answer period.

Lewy Body Dementia (LBD) includes both:
Dementia with Lewy Bodies (DLB) and
Parkinson’s Disease Dementia (PDD)

Treatment and behavior management is the same for both.

According to the research criteria, someone is diagnosed with DLB when both cognitive changes (hallucinations and fluctuating cognition) and parkinsonian symptoms (gait and balance difficulty and/or tremor) appear at nearly the same time.

And someone is diagnosed with PDD the cognitive changes appear more than a year after parkinsonian symptoms or a Parkinson’s diagnosis.

Brain Support Network uber-volunteer Denise Dagan recently listened to the webinar, and shares her notes below.

For additional resources on LBD, check out Brain Support Network’s list of Top Resources for LBD.

Robin

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Caring for Someone with Lewy Body Dementia
Home Instead Senior Care
June 7, 2018 Webinar

Live Chat with Angela Taylor of the Lewy Body Dementia Association

Lewy Body Dementia (LBD) is most common type of dementia after Alzheimer’s.  Each type of dementia has different caregiving challenges.

Dementia is an umbrella term which is a change in a person’s cognitive skills that interferes with daily functioning. There are over 100 causes of dementia. Some are treatable, like hydrocephalus. Most are progressive.

LBD is the most misdiagnosed form of dementia and affects 1.4 million Americans. It is a disease of older age (50+).  LBD affects more than just cognitive skills. Biologically, there are the same changes as those with Parkinson’s Disease.

Changes that affect movement. Those changes are called parkinsonism because they resemble Parkinson’s Disease.

Cognitive changes are not so much memory initially, but in planning, paying attention, understanding how things relate in 3D, fluctuations in their cognition even from hour to hour.

Changes in mood and behavior commonly seen in mental health disorders, like hallucinations (commonly people, animals or children) and delusions (when you think something is true, even with no facts to support the belief), depression and anxiety.

REM sleep behavior disorder – physically acting out dreams (hit, shout, kick, fall out of bed), or insomnia, restless leg, sleep apnea

Changes in autonomic nervous system, including digestion, constipation, low blood pressure.

Q&A

Q. How to best deal with hallucinations?

A. Up to 80% of people will have hallucinations. Sometimes, it is the first symptoms families notice. It can be frightening for the family, even if the subject of the hallucination is not frightening to the person with LBD. Hallucinations are a huge indicator that you are dealing with LBD as it is not a symptom that appears early in PD.

Caregiver should listen with your heart before listening with your brain. Respond to what your family member is feeling because you cannot convince them they are having a very real hallucination. First comfort their emotional state. Enter their reality. Engage in ‘therapeutic lies’ to help them deal with what they are experiencing. Try moving them to another location/room to change their visual experience. Turn off TV. Remove mirrors.

Q. How do you convince relatives who only see LBD symptoms on a person’s good days that there really are challenges?

A. People with LBD can really rise to the occasion when they are visiting with someone they are excited to see. The next day they are depleted and their Sx are all worse. If you want a relative to see the aftermath, you really need to ask them to visit for a few days to see the fluctuations in person. Provide the relative with educational material or forward them web resources links explaining LBD symptoms.  Sometimes, the relative is resistant due to fear and grief that they don’t want to believe the person with LBD is declining so dramatically.

Q. How to best deal with delusions?

A. Every situation is unique due to individual experience. Angela’s father became convinced his wallet was stolen. Capgras syndrome = someone believes a person in their household has been replaced by an imposter. Respond that you will fetch the person who has been replaced, leave for a few minutes and return. Often someone with LBD will not see their home as being their home. Therapeutic lies to calm fears or tell them what they believe is going on here is not happening where they live, then relocate them.

For both hallucinations and delusions you may have to try a few different calming comments before finding one they can buy into. As long as you remain calm and not escalate the situation, you will eventually be successful.

Q. Are there treatments for LBD or detrimental treatments for mis-diagnosis of LBD?

A. LBD has a lot of symptoms. There are medications that help many of those Sx. We can’t make dementia go away, but we can improve quality of life for both the patient and family caregiver. You really need a specialist for this because when you treat one area, you may make another worse. Treating autonomic symptoms nearly any doctor can do. Speech therapy can help as those muscles are affected. Physical therapy can help to counter stiffness and rigidity of parkinsonism rather than medications.
Those that treat cognitive skills (Nameda, Exelon) can improve hallucinations, anxiety, etc.  Treating movement symptoms medications can worsen hallucinations in LBD. May not treat minimal movement symptoms.  Treating behavior and mood symptoms (depression and anxiety) can improve quality of life and make them cooperative to care.
Treating hallucinations & delusions medications can worsen parkinsonism symptoms.

5 areas of symptoms in LBD:
Thinking
Movement
Behavior/Mood
Sleep
Autonomic dysfunction

LBDA recently added 24 major medical institutions as centers of excellence for LBD treatment. Increases opportunities for families to participate in research trials.

Q. Importance of early diagnosis, but how?

A. Start with your primary care physician. They should rule out underlying medical conditions. If they can’t figure it out they should refer to a neurologist. 2/3 of accurate diagnosis are done by neurologists, neuropsychologist, geriatricians. To diagnose, they may do a brain scan, cognitive evaluation or other tests to narrow the diagnosis.

Q. Family member with LBD symptoms include jerking of the arms and hands as well as staring unresponsively.

A. Staring into space is a manifestation of fluctuating cognition or orthostatic hypotension (low blood pressure). Parkisonism symptoms include masked face, stiffness, tremor. Jerking can be caused by medications used to treat parkinsonism or may be a symptoms of LBD. You should have a doctor see her.

Q. How quickly do motor skills decline? Do some symptoms present before others?

A. LBD is an umbrella term. There are 2 specific diagnoses.  Patients w/PD that then develop LBD have PDD. They have the same Lewy bodies in their brain but heir earliest problems are motor. DLB initially has cognitive issues, and later develop motor symptoms. Each individual will have varying degrees of intensity of symptoms between the 5 areas of symptoms in LBD.

If something has changed suddenly it is important to take your family member to see a doctor. It could be a medical issue that can be treated, but if it is physical changes it could be transition into a later stage of the disease. Only a doctor can determine this distinction. If so, it could be time to call in hospice to support the family.

Q. What should I look for in final stages of LBD and how to choose a good hospice?

A. There are no formal stages of LBD. Late stage is characteristic of being unable to care for themselves in all areas of daily living. Tell your Dr. if your family member having trouble swallowing so they can help you put services in place to support the patient and family, including hospice, speech therapy, feeding specialist, etc. Tell your Dr. if you think your family member may be in pain. Physical therapy & occupational therapy can bring in a hospital bed, special padding, etc. to make them more comfortable. Engage hospice and in-home care as early as possible to support the family so the family can do less hands-on care and focus more on bringing in experiences your family member will enjoy (music, art, movies, reading aloud, animals, family, etc.)

Q. How to deal w/LBD family member who has lost involvement in life?

A. LBDA has a private Facebook group so you can see what others are dealing with and share creative ways to cope. Talk to your Dr. about your family member’s change of activity and motivation. If it is depression it can be treated. Bring your family member’s passions to them or take them to their passions (Example: golf – can go putting, watch friends/fellow golfers at the driving range or a tournament, even watch a tournament on TV). Keep people socially stimulated, physically active and feeling they contribute value to society in addition to emotional support.

Dementia Resources:

– HelpForAlzheimersFamilies.com

– Facebook.com/RememberForAlzheimers

– HomeInstead.com

– LBDA Research Centers of Excellence: www.lbda.org/rcoe

– An Introduction to LBD Booklet: www.lbda.org/content/intro-to-lbd

– LBD Symptoms Checklist: www.lbda.org/go/comprehensive-lbd-symptoms-checklist

– LBD: State of the Science: www.lbda.org/go/lbd-state-science

 

Australian pop duo The Veronicas – mother with LBD and PSP

Australian pop duo The Veronicas were recently named ambassadors for Dementia Australia, after putting their music on hold last year to spend more time with their mother.  After four years of misdiagnoses, their mother was diagnosed with Lewy Body Dementia (LBD) and progressive supranuclear palsy (PSP). Their goal is to use their platform and their mother’s story to break down the stigma and shame surrounding dementia, and to build a social movement to advance community awareness.

Check out the article about The Veronicas here:

www.dailymail.co.uk/tvshowbiz/article-5892653/The-Veronicas-discuss-helping-mother-cope-dementia.html

Cancelled – “What If It’s NOT Parkinson’s?” Webinar on Tuesday, June 12th

Update on 6/11/18:  Unfortunately this webinar is now cancelled.

Brain Support Network group member Steven Russell shared with me today info on an upcoming webinar, which will give an overview of all four of the atypical parkinsonism disorders — MSA, LBD, PSP, and CBD.  Details are:

What If It’s NOT Parkinson’s?

In this webinar, Dr. Mihaela Alexander, Colorado Neurodiagnostics, will discuss atypical parkinsonisms such as multiple system atrophy and Lewy body dementia, among others (PSP, CBD). Dr. Alexander will cover what we know about these conditions and what treatments are available for each condition.

Tuesday, June 12
10-11am CA time

Organizer:
Parkinson Association of the Rockies, Denver, parkinsonrockies.org

Registration:
attendee.gotowebinar.com/register/3367947443153312002

General Information:  (same as what is above)
parkinsonrockies.org/programs-services/event-calendar/276/2018-06-12/what-if-it-s-not-parkinson-s-webinar

 

“Lewy Body Rollercoaster” – Alzheimer’s Weekly

Here’s an excerpt from an Alzheimer’s Weekly article from April 12, 2014 about Lewy body dementia (LBD):

www.alzheimersweekly.com/2014/07/lewy-body-rollercoaster.html

Excerpts from

Lewy Body Rollercoaster
April 12, 2014
Alzheimer’s Weekly

Attention, alertness and cognition have dramatic fluctuations in Lewy Body dementia. Caregivers call these ups and downs “The Roller-Coaster of LBD.”

“I watched my husband experience a decline in cognition followed by a period of what seemed like improved function only to plunge again into confusion with more frequent hallucinations,” says one caregiver newly acquainted with Lewy body dementia (LBD). According to the Lewy Body Dementia Association (LBDA), these ups and downs in function are sometimes refer to by family caregivers as the “roller-coaster effect” of LBD. Fluctuating levels of cognitive ability, attention and alertness are one of the core features of LBD.

Important Diagnosis
“The combination of the motor signs of Parkinson’s disease (slowed mobility, stooped posture and tremor) and mental confusion, especially if the degree of confusion fluctuates day to day, should raise a red flag for suspicion of LBD,” says Howard I. Hurtig, M.D., Chair, Department of Neurology, Pennsylvania Hospital, and Elliott Professor of Neurology, Perelman School of Medicine, University of Pennsylvania. “If those symptoms are accompanied or preceded by REM sleep behavior disorder (vivid dreams, dream enactment, hitting bed partner, falling out of bed) and visual hallucinations (seeing people, animals, etc., that aren’t truly there), then the diagnosis of LBD is almost certain. Even when all symptoms of LBD are present, it is critical for the evaluating doctor to look for underlying, TREATABLE causes of dementia.” A thorough assessment will include an inventory of daily medications (drugs can produce a “chemical” state of pseudodementia), CT or MRI scan of the brain, blood tests for thyroid function and vitamin deficiency and other causes of dementia that can be identified by routine study.

Following Alzheimer’s disease, LBD is the most misdiagnosed form of dementia but the second most common cause of progressive dementia, affecting 1.3 million Americans. LBD is associated with abnormal protein deposits in the brain, called Lewy bodies, that impair thinking, movement, sleep and behavior (causing people to see hallucinations or act out dreams, sometimes violently). Also, it affects autonomic body functions, such as blood pressure control, temperature regulation, and digestion. Recognizing symptoms early can help people with LBD get comprehensive and appropriate treatment and help caregivers get much needed support. It’s difficult to diagnose LBD, because its early symptoms resemble symptoms found in Alzheimer’s and Parkinson’s disease.

Man found joy in completing puzzles that were family photos

This article from last year is about twin daughters who discovered a company that created puzzles from family photographs, and that their father with Lewy body dementia (LBD) really enjoyed putting together these puzzles.

This activity might be of interest to more than those with dementia.

www.brainandlife.org/the-magazine/article/app/13/1/23/puzzle-power-as-lewy-body-dementia-narrowed-their-fathers-world

Congratulations to “Sue’s Story”

Congratulations to “Sue’s Story” — winner of the “Audience Choice Award” for the best documentary at last weekend’s Jasper Poppy International Film Festival in Morgan Hill, California. When Sue Berghoff was diagnosed with Lewy Body Dementia (LBD), her life was turned upside down. Like most people, she had never heard of the disease even though it is the second most prevalent form of dementia after Alzheimer’s. She encountered a society in which the existence of dementia is burdened by misconceptions, fear and shame. What she did next created a ripple effect of hope and change. Sue’s husband Chuck Berghoff is a member of Brain Support Network’s  LBD caregiver support group. Brain Support Network’s CEO Robin Riddle appears in the documentary, speaking about the importance of brain donation for LBD and the value of a caregiver support group. Stay tuned to Brain Support Network for more news about the distribution of “Sue’s Story.”

Capgras syndrome – almost 20% of people with LBD have

This is a sad but helpful article on Capgras syndrome, a specific type of delusion where a person believes that loved ones have been replaced by identical duplicates. They often believe that the loved one has been kidnapped and the “imposter” is a bad person. This is very common within our local Lewy body dementia support group. According to the article, one report showed a prevalence of 16.6 percent of those with LBD have Capgras syndrome.

Here’s a link to the article in today’s Washington Post:

 

www.washingtonpost.com/national/health-science/this-strange-syndrome-causes-people-to-think-their-loved-ones-have-been-replaced-by-identical-impostors/2018/04/06/0091f168-1be6-11e8-9de1-147dd2df3829_story.html

Health & Science
This strange syndrome causes people to think their loved ones have been replaced by identical impostors
Washington Post
By Meeri Kim
April 7, 2018

Robin

 

Anosognosia – lack of awareness (not denial) of one’s own dementia

This short article from Next Avenue (nextavenue.org) is about anosognosia, or the lack of awareness of one’s own dementia.  This is not denial but being unaware.  “This lack of awareness can cause major stress and heartache for caregivers.”

Here’s a short excerpt:

Both of Kathy Kling’s parents, who are divorced, have Alzheimer’s. Kling recently talked with her mother, Karen Kelly, about her father’s disease. “Oh, I hope I never get it,” her mother replied.  She was diagnosed six years ago.

The full article is here:

www.nextavenue.org/parent-doesnt-recognize-dementia/

When Your Parent Doesn’t Know He Has Dementia
It’s a common aspect of the disorder, but tough on caregivers
By Emily Gurnon, Health & Caregiving Editor
Next Avenue
March 28, 2018

Robin

 

“Choose Your Attitude for the Journey” (empowering caregivers for the long journey)

Though this handout is for a dementia caregiving class by a woman whose husband had Lewy body dementia, I think this resource applies to all caregivers. In the few places below where you see “LBD,” replace that term with the disorder with which you are coping (if it’s not LBD).  See what you think….

Online friend Pat Snyder’s husband John died with Lewy body dementia in November 2015. She is the author of a wonderful book for those coping with the early stages of LBD titled “Treasures in the Darkness: Extending the Early Stage of LBD” (available through Amazon.com). Pat generously gave us a copy, which is circulating among local support group members.

Pat is teaching a dementia caregiver class in Wake Forest, NC. Her mission is to teach as many “rubber meets the road” tools and techniques as she can, in a context of preserving personhood for the patient while educating, encouraging, and empowering the caregiver.

Pat recently shared the notes from the first lesson of this caregiving class. She recommends five initial steps that all caregivers take at the beginning of their caregiving journey so that they can be strong for the duration of that journey. The five steps are:

• Be positive
• Be proactive
• Be perceptive
• Be persistent
• Personify the disease

The lesson goes through these five points. Pat gave permission for me to share her lesson notes here.

Robin
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“Choose Your Attitude for the Journey” (Lesson 1**)
from Dementia Caregiver Class in Wake Forest, NC
by Pat Snyder ([email protected])
February 2018

There are five first steps that I recommend for you to take as you begin your dementia caregiving journey. These approaches will strengthen you in that role for the duration:

• Be positive
• Be proactive
• Be perceptive
• Be persistent
• Personify the disease

Be positive.

After your Loved One’s diagnosis of dementia you are likely to be overwhelmed with negative emotions. These emotions are your first hurdle to overcome, and they tend to be ongoing.

Therefore, a commitment to use positive choices to overcome negative feelings is a technique that will serve you well throughout your time as a caregiver.

Using a positive attitude to overcome a negative situation is not denial of it but a conscious effort on your part to override its impact. There are a number of ways to address this choice of being positive. It takes self-discipline and commitment to fight back an enemy that is trying to steal precious moments from your lives. It often involves doing the opposite of what you are feeling in the moment. So first, identify that negative feeling. Then choose to go 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 dementia.

Be proactive.

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 dementia symptoms.
• Learn about treatments for LBD symptoms.
• Learn about non-pharmacological (non-drug) interventions.
• Learn to identify the specific triggers that affect your Loved One’s experience of LBD.
• Find the right doctor who knows how to treat LBD
• Connect with other LBD caregivers to continue strengthening yourself.

When your Loved One received the diagnosis, you likely also 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 LBDA. Find medical journals, articles, and books written by experts and online support groups that offer reliable information and social support. Search for the right doctor who specializes in LBD care or who is willing to learn about proper treatment for this challenging and complex disease. Do not settle for one who does not respect you as the key member of the care team.

Be perceptive.

Be sensitive to the emotional and psychological impacts that dementia can have on you and your family. If left unaddressed, these things can have devastating physical consequences for you and your Loved One. They may determine how gentle the journey is for all of you. The diagnosis 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 grief issues.

A second element of being perceptive is to be sensitive to your Loved One’s symptoms. You see him 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 dementia specialist and work together to find solutions. Dementia patients may practice “Showtime” behaviors at doctor appointments, which make them seem to be much better than they are on a daily basis at home. Your report to the doctor keeps the information balanced, honest, and accurate. Sometimes changes in medicine can bring about an improvement of symptoms. At other times, non-drug choices can address these issues.

The third element of being perceptive is to identify the specific triggers that affect your Loved One’s experience of LBD in a negative way. This is where many non-drug interventions can have huge positive impacts on living daily with dementia.

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 disease experience. You must be alert and perceptive to see what things trigger agitation or frustration. Then you can communicate with key individuals how those things must change in order to make the best care choices.

Be persistent.

Being an dementia caregiver is a long-term commitment. It is a marathon, not a sprint.

The term Lewy roller coaster for LBD folks has been coined to describe the experience due to the ups and downs in cognitive, physical, behavioral, sleep, 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 your Loved One progressively declines. It is a daily choice.

As new symptoms emerge over time, you will need to learn more 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 the intervention working, or is this symptom simply a manifestation of the fluctuations of the disease? This is a typical question for you to ask in your role as 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 those who are involved in your Loved One’s treatment and support. Part of your role is to teach any new person on the health care team about your Loved One’s expression of dementia. You may also need to teach them how to best approach the situations that arise in his care. You will deal with significant family members and friends who encounter him. All these things involve a consistent approach on your part. If your Loved One moves into a nursing home or similar facility, your role as advocate and educator will escalate.

Your steadfast persistence will pay off in a gentler LBD journey 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.

Personify the Disease

One of the most helpful decisions I made early in my Lewy Body Dementia journey with my husband was to personify “Lewy”. It had a huge impact on my grandsons as well as on John and me.

John’s neurologist, Dr. Daniel Kaufer, told us on our first appointment with him that preserving personhood was our key goal for John in all decisions about his care. That resonated with me. It became my touchstone when I had to decide what to do as various symptoms and events presented themselves in our journey.

In my mind, I separated John from his disease. I gave the disease a personal kind of name—Lewy. It gave me someone to blame, who clearly was at fault for whatever was happening. It gave me the power to separate John from actions or words he might do or say that were hurtful. “That’s Lewy talking right now. Just ignore it.” I could say that to myself and know that I was correct. John was not at fault. Truth was not being spoken. A clear enemy was in the room with us, and my job became how to outsmart that enemy. It gave me emotional distance so I could think clearly, problem solve better, and respond kindly to John.

I saw it as a kind of psychological and emotional warfare for a good purpose. Although my enemy was formidable, I still won significant battles along the way that made our overall experience of LBD less damaging to both of our lives. There was victory and empowerment in winning those battles. I was preserving personhood for John and for myself by personifying Lewy.

It also worked beautifully with our grandsons, who were young when John had LBD. When the oldest, Michael, was about five years old, he was chatting happily in the backseat of our car as we drove along a lovely country road. All of a sudden, John barked at Michael harshly and told him he needed to be quiet. Before I had time to think it through, I spoke up and said, “Michael, that is just that mean old Lewy talking to you right now. Your Pops would never talk to you like that. Pops loves you, Michael.” Fortunately, John responded with silence. This caused me to begin using the “mean old Lewy” explanation with all the grandsons from that point on. I would tell them if they entered the room and Pops looked angry or spoke harshly to just leave the room right away. “That was Lewy, not your Pops. Wait a bit and go back to see Pops later.” The boys all seemed to accept that explanation as making complete sense to them. It likely worked because it matched what happened to them. They would reenter the room later and find their sweet Pops happy to see them as usual.. Sometimes I would speak to John and remind him to be especially kind to the boys. We also tried to have only one child at a time in the room with John if he was agitated or tired.

Another example shows how personifying Lewy played out with John. One day John began to have trouble speaking. He babbled a kind of gibberish. I touched his head tenderly and said, “Sweetheart, I can see that you know exactly what you want to say. Right now Lewy is messing with the connection between your thoughts and your ability to speak. Close your eyes, take a nap, and when you wake up you will be able to say whatever you want.” John closed his eyes immediately and went to sleep. When he awakened, he was able to speak normally. That level of trust had been established over a period of years along with the habit of blaming Lewy when a bad symptom presented itself. John had learned that Lewy came and went, and he trusted me to point that out for him. It seemed to keep his anxiety lower.

Personifying Lewy gave the boys more of a sense of empowerment. They clearly stopped taking it personally when John’s disease made him appear mean to them. It also gave them someone to blame for what was happening. It made everything make more sense somehow for all of us while it protected John from the blame he did not deserve. Personifying Lewy enabled me to do a better job of separating the disease from my husband, thereby preserving his personhood while protecting my own heart from being bruised by some of Lewy’s antics.

These first steps lay a foundation for a more gentle journey. Each of them helps you to stay ahead of the disease so you have more control over your daily life. Each of them will make you a better caregiver.

 

**A draft form of this lesson first appeared in a free online booklet, “Prepare to Be an Engaged LBD Care Partner,” by Rosemary Dawson, Jeff Maruna, and Pat Snyder. The booklet may be found here:

www.lbdtools.com/files/CPGuide%20Dawson.pdf

**A briefer form was published by LBDA.org in Resources section.

 

“‘Therapeutic Lying’ and Other Ways To Handle Patients With Dementia”

A family in the local support group has been struggling with their loved one’s delusions.  I suggested “white lies,” which made the family uncomfortable.  I found this 2004 article from The Wall Street Journal (wsj.com) offering three approaches for families to communicate with family members with dementia — therapeutic lying, Aikido, and validation therapy.  These approaches all “require the caregiver to give up trying to force the dementia patient to accept reality, and surrender instead to the fact that the patient is living in another mental and emotional world.”

Here’s a quick example of the three approaches.  “For instance, if Mom insists that she and her long-dead friend Mavis are going out dancing, here are some possible responses:”

* Therapeutic lying: “Mavis won’t be here until later, Mom. Let’s go to the mall for a while and take a walk.”

* Aikido: “I can see you miss having outings with your friends. I share your frustration. The senior center is offering waltz lessons. Would you like to sign up?”

* Validation Therapy: “You wish you could go out dancing again. I remember how beautifully you used to dance. What was it like to go out dancing with your friends? Isn’t that how you met Dad?”

Here’s a link to the full article:

www.wsj.com/articles/SB110012626318870633

WORK & FAMILY
‘Therapeutic Lying’ and Other Ways To Handle Patients With Dementia
By Sue Shellenbarger ([email protected]), Staff Reporter
The Wall Street Journal
Updated Nov. 11, 2004 12:01 a.m. ET