Lewy Body Dementia Shocking Tough Choices Heartbreaking Decisions

When a loved one is nearing the end of life from a disease like Lewy body dementia, emotions run strong, and confusion can overtake the decision process.

I want to share my own personal experience as an LBD caregiver in the hopes it will help others.

We engaged hospice services for my father before he was in the dying process. And I’m so glad we did. He had taken to keeping his eyes closed much of the time he was awake. And slowly he lost the strength to bear any weight on his legs.

In came hospice staff and all of their wonderful resources.

I was surprised when he became more alert and responsive under their care. Looking back, now I realize it makes perfect sense.

They used a proactive strategy to manage the normal aches and pains of getting older and being less active. He had clearly been living with pain but was unable to express it.

How long had that being going on? After a month or two, they suggested further improvement might negate the need for hospice care.

But then influenza swept through the memory care residence. Despite aggressive cleaning efforts by the staff, the flu spread. It wasn’t long before Dad developed a high fever and couldn’t be awakened.

When he was diagnosed with LBD 8 years earlier, I became his “right hand” in all matters.

Together we waded through medical, financial and family affairs. He asked me to go with him to see an elder law attorney to review his legal affairs.

He updated some of his legal documents, but decided against creating an advanced directive, a binding document that identifies ones wishes for medical care if they are dying but unable to speak for themselves.

At the time I was still adjusting to the reversal of our father/daughter roles to press him on it further. As his cognitive abilities declined, I more confidently took over as power-of-attorney and made all decisions in his best interest.

But now he was unresponsive.

One day passed, then another, and yet a third, and still he was no better.

I started questioning the hospice staff more aggressively.

Shouldn’t we hydrate him?

Does he need tube feeding?

How could he possibly recover from the flu if we allow him to become weakened?

I realized then how much I should have pressed Dad on end-of-life decisions when he was in the early stages of LBD.

I was going to have to make this call on my own.

I had arrived at the crossroads of sudden grief for me or extended life for him.

The Importance of Sensitive Discussions

The thought of discussing end-of-life decisions can be painful for everyone, especially if a person is in the early stage of a terminal illness.

That is completely normal, as it requires envisioning the future in which a loved one dies.

But with any terminal illness, including neurodegenerative diseases like LBD, it’s important to have those sensitive discussions early.

This enables the person experiencing mild dementia to express their care preferences while they still can articulate their thoughts and feelings clearly.

End-of-life issues include determining what medical interventions are desired, or should be avoided, when a person is dying.

Such interventions include emergency care or hospitalization, CPR (cardiopulmonary resuscitation), ventilator use, artificial nutrition (tube feeding), artificial hydration (intravenous fluids) and comfort care.

So many of these decisions are intensely personal ones and require asking difficult questions. What are the care priorities are of the ill person?

Do they want to extend their functional ability, maximize their quality of life, or lengthen life?

Comfort care, which is care that alleviates pain and distress, can be started in any stage of dementia, but is an important part of caring for the person with end-stage dementia.

It improves quality of life through reduction of distress.

Tube Feeding or No Tube Feeding? That is the Question.

The biggest question I wrestled with when my father was at the end of his life was nutrition. He had already gone 3 days without food or drink.

I thought perhaps if we used tube feeding or intravenous fluids it might strengthen his ability to recover. But the flip side of the coin kept staring me in the face. What was I saving him for?

People in the advanced stage of LBD are in a progressive state of physical decline. Certainly that was the case with Dad. Even if he recovered from the flu, he’d never recover from advanced LBD.

Like others with LBD, muscle weakness may affect his swallowing ability.

This can lead to aspirating food or liquid, resulting in pneumonia, a common cause of death in advanced dementia. Even without problems with aspiration, he’d probably succumb to pneumonia or heart failure after months of being bedridden.

After conferring with those closest to him, I decided to leave my father’s fate in nature’s hands; either his fever would break, or he would begin the dying process.

The Evidence is Clear

I later learned what experts recommend about tube feeding and advanced dementia care. There is no evidence that supports the use of feeding tubes in advanced dementia and experts recommend that it not even be offered as a treatment option.

Instead, the recommendation by the American Geriatrics Society is to provide food or liquid by hand-feeding, only to the extent that it is enjoyed by the person receiving care.

There is no evidence of longer survival, less pneumonia, improved wound healing, weight gain or improved quality of life with the use of feeding tubes.

So how did nature take its course?

After a week of being unresponsive from the fever, out of the blue my father opened his eyes, stared straight into mine, took a few more breaths and left this world.

It’s been almost four years now. And I am still at peace with my decision.

For more information on comfort care at end of life, read “End of Life: Helping With Comfort and Care” published by the National Institute on Aging.


Lewy Body Dementia learning to live with Lewy Body Dementia.

Approximate Lewy Body Dementia Phases, Symptoms and Considerations

Phase 1 Possibilities

Most caregivers are concerned/worried that something is not right. Symptoms from later stages can also appear this early on the continuum. At the end of this phase, cognitive impairment is difficult to deny.

(Note: Symptoms from later or earlier stages can also appear at this phase.)

Symptoms and subtle changes may include:

  • Increased daytime sleep: two-plus hours
  • Hallucinations
  • REM sleep disorder
  • Restless Leg Syndrome
  • Sense of smell diminished
  • Vision affected (clarity, comprehension and/or peripheral)
  • Hearing affected (clarity and/or comprehension)
  • Speech difficulty (word-finding, pronunciation, etc)
  • Physical coordination diminished
  • Parkinson’s disease diagnosis
  • Shuffling gait
  • Slowness of movement
  • Cog-wheeling (smooth motions now jerky)
  • Posture altered (stooping or leaning)
  • Chronic runny nose
  • Myoclonic jerking
  • Comprehension issues
  • Ability to learn new tasks affected
  • Short term memory impacted
  • Loss of initiative, interests
  • Alertness varies
  • Thinking/learning/ problem solving difficulties suggest dementia
  • Mood: Depressed/Anxiety
  • Fluctuations in mood
  • Able to engage independently in leisure activities
  • Handwriting is affected (often smaller or less legible)
  • Impairments with financial responsibilities
  • May still be able to maintain employment
  • May be able to hide (mask) symptoms
  • Socialization still possible
  • Driving skills affected
  • May accuse spouse of infidelity
Phase 2 Possibilities

By this point, most caregivers are worried that something is seriously wrong and seek medical attention. Frequently given an incorrect diagnosis (Alzheimer’s, Multisystem atrophy, Multi-Infarct Dementia, Depression, Parkinson’s Disease).

Caregivers consult with an elder law attorney by this point: at very least have a Power of Attorney and Medical Power of Attorney document on the patient. Protect assets: family, friends, caregivers may be able to take financial advantage of LO. Caregivers need to familiarize themselves with all finances and assets to possibly consult with a financial advisor.

Symptoms are usually clearer by this point:

  • Balance and stability diminished
  • Ambulates/transfers without assistance
  • Increased risk for falls/requires walker
  • Occasional episodes of incontinence (1 or 2 a month)
  • Some autonomic dysfunction (changes in BP, sweating, fainting, dry mouth)
  • Leaning to one side when standing, walking and seated
  • Parkinson’s symptoms controlled with medication
  • Able to perform most ADLs without assistance

Increased difficulty with:

  • Finding words (aphasia)
  • Organizing thoughts
  • Reading & comprehension
  • Following TV programs
  • Operating home appliances
  • May be able to administer own medications
  • Able to follow core content of most conversations
  • Able to be left unsupervised for two or more hours
  • Delusions more firmly held
  • Capgrass Syndrome (seeing or thinking there are identical duplicates of people, locations, objects, etc)
  • Depressed mood
  • Paranoia
  • Agitation
Phase 3 Possibilities

Correct diagnosis by this point more likely. Caregiver and patient actively grieve. Caregivers may need home health aide assistance to maintain LO in the home. Caregiver needs regular planned respite to maintain their own health. Caregiver health issues often arise and require health care. Patient is at risk for long-term care due to: psychological symptoms, personal safety risk, and caregiver safety and health risks. The needs of the patient significantly affect personal finances.

(Note: Symptoms from later or earlier stages can also appear at this phase.)

  • Ambulation/transfer s are impaired, needs assistance with some portion of movement
  • At risk for falls
  • Increase of Parkinson’s symptoms
  • Increase of autonomic dysfunctions
  • Needs assistance/supervision with most ADLs. May require DME
  • Frequent episodes of incontinence (two+ per week)
  • Speech becomes impaired, projection (volume) may decrease
  • Able to follow content of most simple/brief conversations or simple commands
  • Able to be left unsupervised less than one hour
  • Unable to work
  • Unable to drive
  • Unable to administer medication without supervision
  • Unable to organize or participate in leisure activities
  • Increased confusion
  • Possible delusions & Capgrass Syndrome
  • Inability to tell time or comprehend time passing
  • Increased difficulty with expressive language
  • Mood fluctuations (depressed, paranoid, anxious, angry) requiring medical monitoring
  • Severity of symptoms may increase or decrease
Phase 4 Possibilities

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.

(Note: Symptoms from later or earlier stages can also appear at this phase.)

  • Continuous assistance with ambulation/transfers
  • High risk for falls
  • Needs assistance with all ADLs
  • 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
  • Requires 24-hour supervision
  • May need electronic lift recliner chair
  • Parkinson’s symptoms need regular medical monitoring
  • Autonomic dysfunctions need regular medical monitoring
  • Choking, difficulty swallowing, aspiration, excessive drooling
  • Increased daytime sleeping
  • Hallucinations prevalent but less troublesome
Phase 5 Possibilities

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.

(Note: Symptoms from later or earlier stages can also appear at this phase.)

  • Difficulty swallowing
  • Dependent for all ADLs
  • High risk for URI, pneumonia, and UTI
  • High risk for skin breakdown
  • Patient requires hospital bed, Hoyer lift or Mo-lift, suction machine, etc.)
  • Muscle contractions – hands, legs, arms
  • Lean to either side very pronounced (sometimes called Lewy Lean)
  • May carry a fever
  • May need nutritional supplements – Ensure/Boost/ Carnation Instant Breakfast
  • May require decision whether or not to use feeding tube
  • Unable to follow simple commands or assist with repositioning
  • Decreased or no language skills
  • Constant delusions
  • Fluctuations less frequent and more severe