In early May, the UCSF Memory and Aging Center (MAC) presented the fifth and final webinar in its series on caregiving for those with Lewy body dementia (LBD), a discussion of advanced-stage and end-of-life care topics. While the webinar was geared towards those caring for individuals with LBD, we felt the content would also be helpful for others with cognitive impairment or Parkinson’s disease dementia. The speaker was Maya Katz, MD, a movement disorders specialist with the UCSF Weill Institute for Neurosciences. She covered what caregiving is like in advanced LBD, end-of-life care, indicators of the individual’s prognosis, and advance care planning. We at Stanford Parkinson’s Community Outreach viewed the webinar and are sharing our notes.
This webinar was recorded and can be viewed for free on YouTube here.
If you have questions about the webinar, you can contact the UCSF Memory and Aging Center at MAC@ucsf.edu.
If you missed our summaries of the other webinars in this series, you can read them here:
- “What is Lewy body dementia and how is it treated?”
- “Behavior and mood symptoms in Lewy body dementia”
- “Managing daily activities and fall prevention”
- “Advocacy in healthcare and community settings”
Now… on to our notes from the webinar.
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Advanced stage and end of life care – Webinar notes
Presented by the UCSF Memory and Aging Center
May 7, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach
The presentation began with an acknowledgment from Dr. Katz about the presentation: these are difficult topics that may be sad or challenging to think about. Still, it is important to have this kind of information to help you plan and prepare for the future. Topics included what caregiving is like in advanced LBD, end-of-life care, indicators of the individual’s prognosis, and advance care planning.
Within the palliative care field, there is a concept called “total pain,” which posits that the physical pain experienced by the sick individual is only part of all the suffering caused by the disease. The illness impacts the entire family, including the caregiver, and all family members may experience suffering in the physical, psychological, social, and spiritual realms. Unfortunately, physicians rarely bring up end-of-life issues, and less than half of caregivers say they felt prepared for what was to come.
Caregiving in advanced LBD is very challenging and often causes grief, guilt, and existential distress. Anticipatory grief, a feeling of mourning for an expected future that has been lost, is common. Most caregivers at this stage of illness never feel that they are doing a good enough job of caregiving, even though they are. This feeling of guilt is common and is a normal part of the situation that should be acknowledged. Finding support from a friend circle, support group, faith community, or family is essential. Spiritual care or counseling can be very helpful for the caregiver, family, and person with LBD during this time, to help find perspective.
Resilience isn’t only about enduring; it’s about how you are able to recharge and bounce back. It is not about becoming stoic and being able to endure an increasingly burdened situation; rather, it is about your ability to take a break and recover from a challenging situation.
Caregiver burnout is real: it affects health outcomes and leads to higher mortality in caregivers. Burnout is a healthy, adaptive response – an alarm to notify us that something needs to change before this gets worse. It’s important to notice the alarm is ringing, often by practicing mindfulness and self-care.
What does self-care look like?
- Monitor yourself for signs of caregiver burnout: feelings of exhaustion, irritation, or frustration.
- Promote your own well-being and seek balance.
- Think of it as putting on your own “oxygen mask” on before you help others.
- Build resilience in yourself.
- Strengthen meaning and purpose in life: remember why you have chosen to care for this person.
- Connect with yourself and with others: “connection is protection.”
- Broaden your understanding of your options and choices (self-efficacy): remember that you do have a choice in how you handle situations, even if they are quite difficult.
Palliative care focuses on improving the quality of life of patients and their families facing serious illness. It seeks to affirm life and provide relief from pain, while offering a support system to the family and the patient. While palliative care services can be particularly essential later in the disease, increasingly it is recognized as having great value earlier in the course of the illness as well. In some studies, palliative care not only improved the quality of life, but also the length of life.
Increased slowness and stiffness can cause discomfort and pain and can lead to contractures. Contractures are stiffness or constriction in the muscles, tendons, or ligaments, which prevent the extremity from moving and can cause severe pain. Falls often increase due to the loss of balance and impulsivity. Supervision around-the-clock becomes necessary. Patients become wheelchair-dependent, and, eventually, many will become bedridden.
There are a number of strategies and techniques to manage these issues:
- Range of motion exercises (independent or assisted) and massage to help prevent contractures
- Skin care to ensure skin is clean and dry
- Change positioning every 2 hours to prevent formation of pressure ulcers
- Use a gait belt to help walk and transfer safely
- Mechanical lifts may be needed eventually
- Use specialized cushions or mattress to prevent pressure ulcers
- Broda specialized positioning and mobility chairs
Dr. Katz mentioned a 2019 study in the New England Journal of Medicine entitled “Rehabbed to Death,” which found that for a minority of older adults, sometimes a stay in rehab facility after a hospitalization is actually a gateway into a cycle that sends the individual from the rehab facility back to the hospital, then back to rehab, in their final months of life. The rehab facility in this case is not really able to “rehabilitate” or improve the person’s health or quality of life; more accurately, this should be called “post-acute” care. This can be in part due to payment structures within Medicare and Medicaid that perpetuate the cycle, and it does not generally represent a good quality of life for someone in their final months or weeks.
If your loved one with LBD is hospitalized and you are recommended to send them to sub-acute rehab, it is more of a post-acute care convalescent home rather than a rehab facility. It is something to be aware of.
In advanced LBD, communication often becomes quite difficult. Voice changes, poor attention, confusion, and word-finding problems are common; impaired communication can also lead to anxiety or agitation.
Some basic tips:
- Say “yes, and…” – do not argue, even if they are hallucinating or confused.
- Speak clearly in a calm voice. Tone is often more important than content. Be aware of your tone and facial expressions.
- Ask “yes” or “no” questions rather than open-ended questions.
- Maintain eye contact.
- Offer a reassuring response to frequently asked questions.
- Find a place and time to talk without distractions.
- Refer to people by their names instead of pronouns like he or she, to avoid confusion.
- Talk about one thing at a time.
- Have patience.
- When giving instructions, use simple sentences – one piece of information at a time.
- Recognize what you’re up against.
- Understand that there will be good days and bad days.
Those with advanced LBD often experience hallucinations that may be severe and frightening. Make their neurologist and psychiatrist aware if this is happening.
Behavioral treatments include figuring out or anticipating some possible triggers of the hallucinations or agitation. Cover reflective surfaces, as mirror images are often disturbing to those with advanced LBD. Use a calm tone of voice and avoid confrontation.
At the end of life, hallucinations and psychosis are often so severe that they need medication treatments to help control the symptoms.
The “Five R’s” from the Family Caregiver Handbook:
- Remain calm.
- Respond to the person’s feelings.
- Reassure the person.
- Remove yourself.
- Return when you are calm.
Eating and taking medications
Most people will need help with feeding once the disease is advanced. Keep the patient as involved and independent as they can be; finger foods can sometimes allow them to feed themselves for longer than a fork and knife. Using a plate in a contrasting color can help your loved one to be able to distinguish the food from the plate. Always position them in the upright position when eating, and continue to sit upright for 20-30 minutes after a meal.
Sometimes, those with LBD may refuse to eat due to confusion or hallucinations. They may also experience swallowing problems, such as choking, aspirating food into the lungs, or forgetting how to swallow so that food stays in the mouth.
- Do not use thickeners; evidence shows they can actually worsen quality of life.
- Try carbonated beverages.
- Try smoothie-consistency drinks; thin liquids are most difficult.
- Give medications with applesauce or something of a similar consistency.
- Alternate between a bite of food and a sip of fluid.
- Have them do a chin tuck when swallowing.
- Benevolent trickery is sometimes necessary.
Weight loss is expected for those with LBD and is an indication of end-stage disease. Anorexia (lack of eating) and cachexia (weakness and wasting of the muscles) are common. It may seem counter-intuitive, but high-calorie supplements or appetite stimulants will not help with these issues and can actually worsen quality and quantity of life. It can be very hard to see the number on the scale continuing to drop, but it’s not something we can fix – it’s a hallmark of end-stage LBD.
Toileting and incontinence
Give your loved one as much privacy and independence as is consistent with their safety. Give them extra time, assess if they need help, and acknowledge that it may be uncomfortable or embarrassing for them. Timed voiding – visiting the bathroom at regular times throughout the day – can be very helpful to keep them comfortable and avoid accidents. A pad inside the absorbent briefs can provide extra protection. The Liberty catheter is an external catheter that goes on at bedtime, which can be helpful. Consider keeping a urinal or commode at the bedside so they do not have to get up to the bathroom overnight.
It’s important to continue dental care. Brush teeth twice a day; eventually, they will likely need assistance with this task. A little bit of lemon juice can aid in swallowing and help clean the palate.
Practices to avoid in advanced LBD
In the past, patients with swallowing difficulties were often given thickened liquids. However, recent studies have shown this is actually a harmful practice and should not be continued! Thickened liquids are generally so unpalatable that people often refuse to drink them, which can lead to dehydration and kidney damage.
Feeding tubes are another practice in those with dementia that have now been shown to be counter-productive: artificial nutrition does not prolong or improve life for those with advanced dementia. Rather, assisted oral feedings are the best course. Post-operative pain and infection after feeding tube insertion, as well as increased likelihood of delirium and repeat surgeries, are some of the reasons why this practice is no longer recommended. Caregiver burden often increases as well.
Fluctuations in alertness
As LBD progresses, individuals will have more and more fluctuations of alertness. This often presents as seeming “zoned out” for a few minutes, and then they come back to normal. It is not a medical emergency, and there is no known treatment.
End-of-life care: Days to weeks
At this point, most people are bedridden. Focus on creating comfortable surroundings. Bring nature indoors, if possible, and play your loved one’s favorite music. Soothing touch, such as a gentle massage, can be relaxing and pleasurable. Smells such as lavender oil can be pleasant as well.
In terms of medications, if Sinemet (carbidopa-levodopa) has been helpful for them, continue it for as long as possible. Reduce other medications to only what is necessary, or will help them remain comfortable. If liquid formulations of medications are available, switch to those; if the person is unable to swallow, then suppositories may be the best option. Most patients at this stage of LBD will need sedating medications to control the agitation and psychosis that generally increase at the end of life.
Prognostic indicators in LBD
There are certain indicators that provide a prognosis – the likely course or time frame of late-stage LBD. These indicators are used by Medicare to determine eligibility for hospice services, which require an estimate of six months or less of life.
For those with weight loss, these are the same criteria as for “Adult Failure to Thrive,” a different medical diagnosis. The main criteria for hospice eligibility are a body mass index (BMI) of less than 22, and a score on the Palliative Performance Scale (PPS) of 40 or less, indicating someone who is mainly in bed and needs assistance with activities of daily living (ADLs). These two factors are strong indicators that someone is likely within 6 months of the end of their life, and should receive hospice services to ensure the best care.
For those with dementia, hospice eligibility requires at least one of the following in the past 12 months:
- Aspiration pneumonia
- Pyelonephritis (kidney infection)
- Septicemia (infection of the blood)
- Stage 3 or 4 pressure ulcers
- Recurrent fever
- 10% weight loss (or greater) in the past 12 months
- Albumin less than 2.5 mg/dL (measurement of protein indicating malnutrition) and greater than or equal to 7C on the FAST scale:
- Speaks 5-6 words per day
- Speaks only 1 word clearly per day
- Cannot walk without personal assistance
- Cannot sit up without personal assistance
- Can no longer hold up head independently
What do people die of in LBD?
There have been very few studies on this question. For most, aspiration pneumonia – a lung infection caused by inhaling food or oral secretions into the lungs – is the cause of death. Sometimes aspiration pneumonia leads to sepsis, an extreme reaction by the body in response to a systemic infection, which can be fatal. Reduced mobility, falls, or fractures can also be life-threatening. Failure to thrive, which is the severe weight loss associated with late-stage dementia, is another cause as well.
Hospice care: Role of the neurologist
Right now, only about 5% of patients with LBD will receive hospice services
It’s important that more LBD patients and families receive the help and care available to them through hospice. Your loved one’s neurologist can still play a helpful role even after hospice is involved, by helping to communicate and coordinate with the hospice team and educating them about the specific needs of LBD patients, such as medications that are commonly used in a hospice setting, but which should NOT be given to those with LBD.
Medications to avoid in hospice patients with LBD:
- Haloperidol (Haldol)
Alternative medications that are safer to use in LBD are quetiapine (Seroquel) for agitation/psychosis and ondansetron (Zofran) for nausea.
The Advance Healthcare Directive is a legal document that allows an individual to spell out their preferences for life-saving medical interventions and end of life care, ahead of time, and designates an individual who is empowered to make healthcare decisions on their behalf, if necessary. This requires that you speak with the loved one about their wishes while they are still able to consider such decisions.
Most people who go into cardiac arrest are not able to be resuscitated successfully; only 5% of people with dementia who undergo CPR survive. It is not like the movies; the chances of a good recovery are actually quite small, contrary to the portrayal in the movies. The POLST (Physician’s Order for Life Sustaining Treatment) is a form, usually yellow, that tells emergency professionals what to do in a crisis when the patient cannot speak for themselves.
Dr. Katz cited a quote from the book Being Mortal: Medicine and What Matters in the End by Atul Gawande, MD:
“… Our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer.”
Two questions to ask around advance care planning:
- If you look ahead, what worries you the most?
- When you look to the future, what are you hoping for? (in addition to a cure)
“Our ultimate goal, after all, is not a good death, but a good life to the very end.” – Atul Gawande, MD
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Question & Answer Session
Q: Are the Broda chairs covered by insurance, typically?
A: Broda chairs are covered by Medicare for hospice. Without being eligible for hospice, they are difficult to get unless you pay out of pocket (they can cost thousands of dollars!).
Q: When my loved one starts coughing or choking, I worry about aspiration and start to panic. What can I do in this situation?
A: As mentioned before, don’t use thickened liquids. Make smoothies at home, offer carbonated beverages, and practice tucking the chin right before swallowing. Alternating a bite of food and a sip of liquid can be helpful. These measures tend to help most people. Keep in mind that some foods – such as steamed vegetables – contain liquid as well. Also talk with your loved one about what foods are most important to them. Try to keep perspective – you can’t prevent every risk.
Q: Does Medicare cover palliative care for those with the early stages of LBD as well?
A: Yes! Dr. Katz sees patients in her weekly palliative care clinic for those with PD and LBD, among other related diagnoses. Some of her patients she sees as often as once a month. Those who are on hospice or otherwise struggle to come in but need care can often be seen via telehealth video options.
Q: If someone doesn’t process reality well and thinks they are in an airport, how would you respond?
A: In general, try not to argue with the person. This is their reality, at least in that moment. Remain calm and non-confrontational; don’t dismiss what they are seeing or experiencing. Is it is frightening or distressing to them? If so, reassure them that they are safe and you are with them. If they are not frightened, maybe change the conversation to a different topic and move them to focus on something else. But if they’re not bothered, it’s fine. You can even steer the conversation tangentially, such as talking about vacations you have taken together in the past, or asking them where they would want to go if they could go
Q: Does UCSF handle brain donations for those with LBD, or do they refer elsewhere?
A: If they are seen at the Memory and Aging Center at UCSF, there may be other research opportunities for brain donation. The Brain Support Network is the main organization that they would refer to.