Category Archives: LBD

I ran across this 2006 article today in the American Family Physician journal. It’s a good, short description of dementia with Lewy bodies, intended for use by family practic physicians.

You can get the article free online at:

www.aafp.org/afp/20060401/1223.html –> in HTML

www.aafp.org/afp/20060401/1223.html –> in PDF

You might provide this article to your general/family practice MD!

The diagnostic criteria listed in Table 1 of the article is from 1996. The diagnostic criteria was updated in 2005. (The latest criteria are: McKeith IG, Dickson DW, Lowe J, et al. Diagnosis and management of dementia with Lewy bodies: third report of the DLB consortium. Neurology 2005;65:1863­72.)

Figure 1 offers a good comparison of AD and DLB.

In the section on pharmacological treatment of DLB, the authors state: “Patients with significant visual hallucinations are reported to have better response to cholinesterase inhibitor therapy than other patients with dementia; these medications improve fluctuating cognition, hallucinations, apathy, anxiety, and sleep disturbances.” (ChEIs include Aricept, Exelon, and Razadyne.)

And: “Patients who have dementia with Lewy bodies should not be given the older, typical D2-antagonist antipsychotic agents such as haloperidol (Haldol), fluphenazine (Prolixin), and chlorpromazine (Thorazine). Patient records should document this and caregivers should be informed. As many as one half of patients who have dementia with Lewy bodies who receive neuroleptic medications experience life-threatening adverse effects characterized by sedation, rigidity, postural instability, falls, increased confusion, and neuroleptic malignant syndrome, with an associated two- to threefold increase in mortality. Atypical antipsychotics may be tried in low doses, but these can cause similar adverse effects and increase the risk of stroke.”

The associated summary handout for patients and families is very disappointing:

www.aafp.org/afp/20060401/1230ph.html

Copied below is the abstract of the article.

Robin

—————————–

American Family Physician. 2006 Apr 1;73(7):1223-9.

Dementia with Lewy bodies: an emerging disease.Neef D, Walling AD.
Via Christi Family Medicine Residency, Wichita, Kansas 67218, USA.

Dementia with Lewy bodies appears to be the second most common form of dementia, accounting for about one in five cases. The condition is characterized by dementia accompanied by delirium, visual hallucinations, and parkinsonism. Other common symptoms include syncope, falls, sleep disorders, and depression. The presence of both Lewy bodies and amyloid plaques with deficiencies in both acetylcholine and dopamine neurotransmitters suggests that dementia with Lewy bodies represents the middle of a disease spectrum ranging from Alzheimer’s disease to Parkinson’s disease. The diagnosis of dementia with Lewy bodies is based on clinical features and exclusion of other diagnoses. Individualized behavioral, environmental, and pharmacologic therapies are used to alleviate symptoms and support patients and their families. Cholinesterase inhibitors are more effective in patients who have dementia with Lewy bodies than in those with Alzheimer’s disease. Conversely, patients who have dementia with Lewy bodies do not respond as well to antiparkinsonian medications. Anticholinergic medications should be avoided because they exacerbate the symptoms of dementia. Traditional antipsychotic medications can precipitate severe reactions and may double or triple the rate of mortality in patients who have dementia with Lewy bodies.

PubMed ID#: 16623209 (see pubmed.gov for abstract)

The July/August 2006 issue of Neurology Now contains a sweet article from Ginnie Burkholder, who cares for her husband with Lewy Body Dementia (LBD).  You can find the short article by going to https://www.aan.com/ and then doing a search on Burkholder.  I’ve copied the text below.

Neurology Now, a relatively new online publication of the American Academy of Neurology, is available free.  This magazine is written for patients, families, and caregivers of persons with neurological disorders — from migraine headaches to Alzheimer’s Disease.  This bi-monthly magazine focuses on positive messages regarding wellness and prevention, current research, clinical trials, and patient stories that emphasize coping.

Robin
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Dance of Loss: Longing for the life shared before a husband’s dementia
Ginnie Horst Burkholder
Neurology Now
July/August 2006

It is a May morning as I listen to Anne Murray sing “Could I have this dance for the rest of my life?” I once knew that sentiment for my husband. I miss the vibrant person who invited that feeling, and I miss the dance.

I do my exercises with the sun on my back, sitting in front of an east window. Finished, I stare at the wallpaper. I am back in time when it was hung by my husband, who always said he could do anything. The match is off on this wall. Was this the beginning of this cannibalistic disease or just one of those mistakes anyone can make?

I look at two more walls. One matches perfectly. Another waited years for the papering job to be completed. He had lost interest. Or was it the disease again? I am flooded with memories of life before the onset of this progressive dementia caused by brain abnormalities called Lewy bodies. I marvel at all we managed to enjoy before his diagnosis nine years ago at the age of 51.

People say you have your good memories. It is true. I remember that once he knew my birthday, knew I didn’t want sugar on my cereal, knew I needed a backrub, tossed me a wink. But the longing for what was eats at me, and I cannot stay there. The memories are stark reminders of what should have been. Like a bird with nowhere to land, my thoughts avoid the past and the certain deterioration in the future and, instead, alight unwillingly in what we have, the present.

Nelson still remembers my name, but he doesn’t remember me. Usually. Last night, he couldn’t say my name. He resorted to Amy’s mom. I hurt for him, provided my name, and said, “I’m here. What do you need?”

I’m calm, compassionate, but inside, like a leaky faucet, sadness drips from a never-ending spigot of loss.

The loss and longing are everywhere. It is there at lunch in an innocent conversation with my sister about water softeners when I ask how much salt they go through. She doesn’t know; her husband takes care of that. The longing for someone to be the live-in handler of such responsibilities explodes like a fire burst inside of me. I cannot escape that I alone am the manager for this household.

Another lunch, and another sister is having her neck rubbed by her husband. She says it feels so good she doesn’t want to move. I feel the stiffness in my own neck and shoulders, and know the futile longing for Nelson to be able to do what he once would have done willingly and easily. Lewy body disease has made his motions stiff and wooden.

Reminders are all around me. Couples our age are traveling. We take turns driving. It is like the carrot that should have been ours has gone to everyone else.

This morning I say to him, “Eat something and take your pills.”

“You played a trick on me,” he answers. “There is nothing in there.”

I tilt the pills from the container into his hand and assure him there is. I no longer bother to wonder why or how he can do what he does.

His offering of love to me is the morning kiss goodbye at the beginning of the day as he goes out the door to his adult daycare or the things he made as he comes back home later that afternoon. There is a snowman made from fuzzy little puffballs, a small painted wooden horse, or a card with some painting on it. He brings them proudly and we put them on display.

I long for him to anticipate my need and bring me unexpected love offerings. But the blinds this disease has pulled over his vibrancy are opened for only brief moments. “You are my queen for the day,” he says, as I tuck him in for the night. In those moments, I know his love remains even though the dance is gone, replaced by wooden feet, confusion, this always unpredictable disease, and so much longing for what could have been.

This post is about five phases of Lewy Body Dementia, according to a group of caregiver spouses.

Some members of the LBD_caringspouses Yahoo!Groups list have been working on the “LBD Approximate Phases” for a year now.  I just received from Sue Lewis this final version of the Phases.  This caregivers’ view of the five phases of LBD is a worthwhile document, especially for those new to the world of LBD.  They’ve been working on this list on and off for so long that, at this point, they are not inviting your suggestions on how to modify the document.  But they welcome any general comments (primarily positive ones, I think)!  You can send comments to me and I’ll pass them on (unless you know Sue Lewis’ contact info from the LBD_caringspouses list).

Robin

LBD APPROXIMATE PHASES AS SEEN BY CARING SPOUSES
August 2007

Facilitated by Sue Lewis of West Virginia, edited by June Christensen, Kansas

GLOSSARY OF ACRONYMS

ADL: Activities of Daily Living – dressing/bathing/ feeding oneself
BP: Blood Pressure
CG: Caregiver
DME: Durable Medical Equipment–wheel chair, shower chair
DPOA: Durable Power of Attorney
LBD: Lewy Body Dementia
LO: Loved One
LW: Living Will
MPOA: Medical Power of Attorney
PCP: Primary Care Physician
POA: Power of Attorney
REM: Rapid Eye Movement sleep disorder
URI: Upper Respiratory Infection
UTI: Urinary Tract Infection
WCh: Wheelchair

Most caregivers are concerned/worried that something is not right. Please note that symptoms from later stages can appear at this early phase. At the end of this phase, dementia is becoming difficult to deny

• Possible REM sleep disorder
• Restless Leg Syndrome
• Hallucinations
• Possible Parkinson’s disease diagnosis
• Myoclonus (involuntary jerking) 
• Increased daytime sleep – two+ hours
• Loss of sense of smell (Anosmia)
• Vision problems
• Hearing loss
• Speech problems ·
• Impaired physical coordination (ataxia)
• Shuffling gait
• Slowness of movement
• Altered posture (called Lewy Lean) 
• Chronic runny nose
• Impaired comprehension and cognition
• Inability to learn new tasks
• Loss of initiative and interests
• Diminished alertness
• Short-term memory loss but able to hide (mask) symptoms or engage in show time ·
• Mood: Fluctuations
• Depressed/anxious
• Paranoia
• May accuse spouse of infidelity, aggression
• Able to engage independently in leisure activities
• Handwriting is affected
• Impaired ability to handle financial responsibilities · Still may be able to work but driving skills often compromised

Most caregivers are worried that something is wrong and seek medical attention. May be given an incorrect diagnosis (Alzheimer’s, Multisystem atrophy, Multi-Infarct Dementia, Depression, Parkinson’s). Please note that symptoms from later or earlier stages can appear at this phase. It is strongly suggested that caregivers consult with an elder law attorney at this phase. At least, have a Power of Attorney and Medical Power of Attorney document on the patient. Family, friends, caregivers may successfully take financial advantage of LO. Caregivers need to familiarize themselves with all finances and assets to possibly consult with a financial advisor.

• Ambulates/transfers without assistance but increased risk for falls/requires walker
• Leaning to one side (Lewy Lean)
• Possible fainting
• Able to perform most ADLs without assistance
• Some autonomic dysfunction (changes in BP, sweating, fainting, dry mouth)
• Occasional episodes of incontinence (one or two a month)
• Constipation
• Parkinson’s symptoms may be controlled with medication
• Increased difficulty in:
  • Finding words (aphasia)
  • Organizing thoughts
  • Reading & comprehension
  • Following TV programs
  • Operating home appliances
• May be able to administer own medications
• Able to follow content of most conversations
• Able to be left unsupervised for two or more hours
• Delusions
• Capgras Syndrome (seeing or thinking that a person or objects have been replaced by another identical one)
• May be more depressed
• More paranoid and more agitated

Most caregivers have the correct diagnosis. Caregiver and patient actively grieve. Caregivers need regular planned respite. Caregiver needs require regular preventive health care. Caregivers may need home health aide assistance to maintain LO in the home. Patient is at risk for long-term care due to: psychological symptoms, personal safety risk, and caregiver safety risk. The needs of the patient affect personal finances. Please note that symptoms from later or earlier stages can appear at this phase.

• Ambulation/transfers are impaired
• Needs assistance with some portion of movement
• At risk for falls
• Increase of Parkinsonism symptoms
• Increase of autonomic dysfunctions
• Frequent episodes of incontinence (two+ per week)
• Needs assistance/supervision with most ADLs
• May require DME
• Speech becomes impaired
• Projection (volume) may decrease
• Able to follow content of most simple/brief conversations or simple commands
• Increased difficulty with expressive language
• Able to be left unsupervised less than one hour but unable to work or drive
• Unable to administer medication without supervision
• Unable to organize or participate in leisure activities
• Inability to tell time or comprehend time passing
• Mood fluctuations (depressed, paranoid, anxious, angry) requiring medical monitoring
• Increased confusion
• Delusions
• Increased Capgras Syndrome · Severity of symptoms may increase or decrease

Caregiver at high risk for chronic health/joint problems. Self-care is paramount to providing patient care. The needs of the patient require the assistance of a home-health aide/private-duty aide two-to-seven days per week. Increased patient needs may require potential for long-term care placement. Patient may be declared mentally incapacitated. Caregiver may need to explore Hospice services.

• Needs continuous assistance with ambulation/transfers
• High risk for falls
• May need electronic lift recliner chair
• Needs assistance with all ADLs
• Requires 24-hour supervision
• Autonomic dysfunctions need regular medical monitoring
• Incontinent of bladder and bowel
• Unable to follow content of most simple/brief conversations or commands
• Speech limited to simple sentences or one-to-three-word responses
• Parkinson’s symptoms need regular medical monitoring
• Choking, difficulty swallowing (dysphasia), aspiration, excessive drooling
• Increased daytime sleeping
• Hallucinations prevalent but less troublesome

Caregiver is actively grieving. Potential for increased caregiver stress. Hospice assistance is strongly suggested. Caregiver will need hands-on support from others to maintain LO at home. Caregiver may need to honor decisions made earlier on the Living Will.

• Dependent for all ADLs
• Patient may require hospital bed
• Hoyer lift or Mo-lift, suction machine, etc.
• Assistance with repositioning
• High risk for URI, pneumonia, and UTI
• Skin breakdown
• May have a fever
• Difficulty swallowing with possible decision for feeding tube necessary
• Muscle contractions – hands, legs, arms; lean to either side very pronounced
• May need nutritional supplements
• Ensure/Boost/Carnation Instant Breakfast
• Unable to follow simple commands
• Decreased or no language skills
• Constant delusions
• Fluctuations less frequent and more severe