“Guardianship 101” – Webinar Notes

On August 9th, the Alzheimer’s Foundation of America (alzfdn.org) hosted a webinar on guardianship by Britt Burner, Esq., who specializes in wills, trusts and estates in New York state.

For adults who have been injured in an accident, suffer from an incapacitating physical illness or psychological disorder, or have some other condition that prevents them from caring for themselves, a legal arrangement called guardianship, or conservatorship, places the individual under the supervision of a guardian, or custodian, for their protection and care.

There are two main types of guardianship: guardianship of the person and guardianship of the estate or property. This webinar focused on situations in which a guardianship may be necessary, how to avoid a guardianship proceeding, and the impact that moving between states can have on an individual that has been subject to a guardianship proceeding.

You can find the webinar recording here:


Brain Support Network volunteer Denise Dagan listened to the webinar and shared her notes.



Notes by Denise Dagan, Brain Support Network Volunteer

Guardianship 101
Speaker: Britt Burner, Esq.

Alzheimer’s Foundation of America
August 10, 2018

What is guardianship or a conservatorship?

  • Based on local state law
  • Incapacity vs diminished capacity
  • Unable to make decisions for self and unable to understand the consequences of this inability in
    — Personal needs (health)
    — Property management
  • In NY, not a medical standard; factual determination
    — Medical records are not usually admissible (everyone still has HIPPA rights, so you may not have medical records)
    — Demonstration of determination is usually
  • Least restrictive alternative (person under guardianship is allowed to make decision which they are capable of, like last will & testamate, but not checkbook)


  • Petitioner – person asking for guardianship on behalf of another
  • Cross-petitioner – another person who wants to be guardian when the petitioner ask guardianship be granted
  • AIP – alleged incapacitated person
  • Court evaluator – ‘the eyes and ears of the court,’ appointed by the court who does an investigation of the circumstances being claimed by the petitioner. May be a lawyer, but not always. Testifies to the court (in NY w/in28 days).
  • Counsel to AIP – hired by the court to represent the AIP. When guardianship is suspected to be needed, the Counsel to AIP is responsible for speaking the AIP’s wishes to the court, even if they don’t make any sense.
  • Other interested parties
  • Guardian of the person and guardian of the property (can both be appointed)

Who can commence a guardianship action?

  • Family member
  • Medical institution
  • Local municipality
  • APS investigations (Adult Protective Services)
  • An individual can request guardianship for themselves

Why does someone commence a guardianship action?

  • cognitive impairment
  • inability to balance a checkbook or make other financial decisions
  • check the mail/pay bills
  • coordinate care
  • vulnerability
    — Senior scams
    — Family member abuse
  • improper actions by appointed agents (inappropriate or untrustworthy people appointed power-of-attorney)
  • invalid documents (insufficient or incomplete powers-of-attorney in your advance directive)


  • court oversight (to ensure those w/POA act in your own best interest)
  • orders from court on big decisions, i.e. sale of property, etc. (title company may question a POA’s actions, but not a court order)
  • third party institution recognition of authority (some banks don’t accept POA but not court orders)


  • court oversight (can be a hindrance & delay when all parties are in agreement; annual accounting to the court can be costly & a hassle, especially when everyone is being honest)
    — reporting requirements
  • costs (court evaluator, accountants, bond – insurance on the estate, commissions to the guardian – not mandatory, lawyer’s fees, etc.) In NY the court decides on how much fees will be and who will pay them, usually the estate in question but sometimes the petitioner (especially if petition is unwarranted).
  • time
  • family disagreements
  • embarrassment

Examples of Powers: Guardian of Person

  • arranges medical care (usually specific court instructions to petition for major medical treatments, removal from life support)
  • consents for treatment
  • make sure ward is fed, housed, educated, entertained and supervised
  • may hire aides
  • if no guardian of property is appointed
    — arrange to be rep payee
    — initiate lawsuits
  • pay debts

Examples of Powers: Guardian of the Estate/Property (Conservator)

  • prudent investment of assets
  • management of bank accounts
  • maintain home
  • prepare tax returns
  • participate in operation or management of ward’s business (court orders will have very specific instructions for the guardian)
  • financially support dependents
  • establish and maintain fiduciary accounts (guardianship accounts cannot have checkbooks, debit cards so money is transferred into fiduciary accounts)
  • provide for cost of care (not arrange for it – Guardian of Person arranges for care)

Does a Guardianship last forever:

  • duration determined at hearing (can be temporary or permanent)
    (One example given was a situation where guardianship only lasted a year to move a woman into assisted living)
  • can petition court for termination (can be termination of guardianship or reassignment of the Guardian, themself)
  • can petition court for removal

How do you avoid a Guardianship?

  • power of attorney
  • health care proxy
    — Including power to make end of life decisions
  • MOLST form (POLST, in CA) – signed by individual and their doctor specifying what types of care the individual allows and disallows.

Guardians MAY NOT…

  • prohibit a ward from marrying
  • vote for the ward (but can assist)
  • Need court approval to consent to:
    — civil committment
    — electric shock treatment
    — dissolution of marriage

Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act (UAGPPJA)

  • all states (excepting 4)
  • goals
  • jurisdiction
    — transferring guardianship between states
    Example: A ward owning property in NY has a guardian appointed in NY but moved to one of the 4 states not covered by UAGPPJA, so they will have to start over and have a guardian appointed in that state. If they had moved to a state covered by UAGPPJA they could have filed a single form to extend that guardianship to the new state, as well as NY.

This really comes in handy when moving an elder between states and keep a single person as guardian. Also allows family to bring suit in the most convenient state if another family member ‘kidnaps’ an elder to another state.

Additional Resources to find legal advice near you:

  • American Bar Association
  • NAELA (National Academy of Elder Law Attorneys), naela.org
  • Local Bar Association

Question and Answer

Q. Are self initiated guardianships always granted by the court? Is this process easier than when initiated by someone else?

A. A self initiated guardianship is fairly rare. Most people who have the ability to say that they want a guardian have the capacity to sign a power of attorney, which is easier and cheaper. There is still a court evaluator appointed and a full investigation and report done. Of course, the proceeding is much easier than when multiple family members are arguing, but you still need to establish a strong need to the court.

Q. Can an APS employee request guardianship for a client?

A. If an APS employee is called to a home and feels guardianship is necessary, they will make a report to the NYC legal department and the city is the petitioner. The APS employee testifies for the city, but they are not the petitioner.

Q. Is the POA short form can be used for benefits and entitlement instead of guardianship?

A. Yes. One way to avoid guardianship is to have a valid, comprehensive POA in place. In NY the standard POA is 16-pages long and that’s the short form. As long as it has all the powers required it can be used in place of guardianship and can be a defense to a guardianship petition.

Q. Please give a few more examples of the need for guardianship.

A. What are the functions of day-to-day living and is there someone appointed to accomplish those tasks for you? If you are not able to bathe yourself and do not have the ability to know who to call for help or to make arrangements to hire in-home care and to pay them, you qualify as someone who would benefit from guardianship. It is the physical and cognitive incapacity combined that usually can be demonstrated to justify a guardianship petition. If you have one or the other you probably don’t require guardianship.

Q. How can a family member get a guardian changed if they do not feel they are doing a good job?

A. Each state is different, but basically you file a petition with the court asking for the guardian to be removed and why. The court will evaluate the situation and make a decision. In NY there are guardianship offices to help families file the paperwork properly.

Q. Does a guardian appointed in a will have the same powers as those appointed by a court?

A. The only time we appoint a guardian in a will is for a minor, if both parents become unable to care for the child, so no. Usually, a guardian for a minor has full authority, not restricted as for an adult.

Q. How would the court decide between siblings disagreeing about the care of a parent?

A. This happens quite a bit. In a case one daughter decided her sister was mistreating their mom. She petitioned the court to have herself appointed guardian to save mom from the sister who was guardian. She needed to prove to the court her mom could not make her own decisions or was under duress by the present guardian or that mom was in danger physical or financially by the present guardian or that the present guardianship was being misused.

Q. Are attorney fees awarded to the victor in this type of dispute?

A. If a petition is brought and guardianship is appointed, the fees are paid for out of the estate. However, if there is a contesting of the guardianship and it is found to be unfounded, the court has discretion to assign fees to the petitioner.

Q. How many times can a ward change guardians?

A. Guardians stay in place until they retire, move, die, are petitioned to be removed for cause, etc. They do not change frequently.

Q. The POA documents my parents signed are in case they are unable to take care of their own affairs, but we feel they need to be used now, but we still have to petition the banks, clinics, etc. How is this simpler?

A. If you have a checking account with a POA not on file with the bank the bank doesn’t know it exists, so you have to submit the POA and have it approved before the agent can act. That is still simpler than going through the courts.

Springing POA is a document that only comes into effect if a person is incapacitated which may require a medical professional put it into effect and needs the POA to act on their behalf.

Q. Is there a standard amount a guardian is paid? It that monthly or annually?

A. Annually is typical, but it is up to the court. The amount varies based on the value of the estate and whether the guardian accepts payment at all.

Q. What happens if the AIP is low income and cannot afford the guardian fees and the court says they must pay them?

A. In NYC there are community guardians for low income cases, but on Long Island they don’t have those. There is a preference for family members to be guardian, which is often free or minimal amounts. If the court appoints a lawyer to be guardian the court can also choose not to assign payment for that service. Courts try not to spread these guardianships around so it does not become a financial burden on the lawyers providing guardianship services.

Q. Caregivers of those with dementia struggle with putting a POA in place so that it is in effect when it is signed.

A. In NY, the affidavit of full effect says, this document is valid at the time it is signed and the person signing has capacity and cannot be revoked due to incapacity. The same as a durable power of attorney.

“How to Ask for Help and Actually Get It – People want to help you. You just have to ask.”

This recent New York Times article is about asking for help. Advice is always given to caregivers to have a specific list of ways that you’d like others to help you or your family member.

The author refers to Heidi Grant, a social psychologist and author of
the book “Reinforcements: How to Get People to Help You.” She
indicates that people want to help you, but you have to ask for help.
Ms. Grant says there are four crucial steps to asking:

* “First, make sure the person you want to ask realizes you need help.
Thanks to a phenomenon called inattentional blindness, we’re
programmed to have the ability to take in and process only so much
information, ignoring the rest.”

* “Second, and the other side of that coin, make clear that the person
you want to ask understands your desire for help — in other words, you
have to ask.”

* “Third, be specific with your request and make sure your helper
knows why you’re specifically asking him or her and not someone else
(or worse, asking a group).”

* “Last, make sure the person you’re asking has the time and resources
to help. We’re all busy, sure, but you probably don’t want to ask for
help from the co-worker who’s juggling five different projects, moving
apartments and prepping for a vacation.”

Here’s a link to the article:


How to Ask for Help and Actually Get It
People want to help you. You just have to ask.
The New York Times
Smarter Living
By Tim Herrera
Aug. 20, 2018


“Compassion fatigue,” including typical trajectory – Notes

On August 1st, Caregiver Teleconnection hosted a teleconference by social worker, Amy Cunningham, on the topic of compassion fatigue as experienced by caregivers.

Amy explained the difference between stress, burnout and compassion fatigue. She identified the signs, symptoms and trajectory of compassion fatigue as well as the five habits of resiliency that can help caregivers to grow, rather than be traumatized by caregiving.

There are five habits you can develop that, when practiced every day, will not only make you the best caregiver you can be (happier, more energetic), but keep your health intact so you will be able to care for your loved one for as long as they need you.  The habits of resiliency include:

#1 – Physical resiliency
#2 – Spiritual resiliency 
#3 – Emotional resiliency
#4 – Psychological resiliency
#5 – Self care

Amy reviewed the typical trajectory compassion fatigue takes:

Phase 1 “Zealot” – full of enthusiasm, go the extra mile, handholding, extra care, willingness to do anything

Phase 2 “Irritability” – begin to take shortcuts, avoid people and conversation about work, make mistakes

Phase 3 “Withdrawal” – clients become irritants, enthusiasm disappears, avoid discussing your job, avoid people & work

Phase 4 “Zombie” – go through the motions, no humor, no fun, disconnected from emotions, lost compassion, lost hope.

You can find the audio recording here:


To sign up for email announcements about these conference calls, sponsored by the WellMed Charitable Foundation, check out:


Brain Support Network volunteer Denise Dagan listened to the conference call and shared the notes below.



Notes by Brain Support Network volunteer Denise Dagan

Compassion Fatigue
Speaker: Amy Cunningham, Social Worker

Caregiver Teleconnection
August 1, 2018

Amy personally experienced compassion fatigue.  Afterwards, she recovered she developed a curriculum to share with others how to identify symptoms and overcome compassion fatigue.

During a flight with her 5 children under 9, even though Amy was attentive to the flight attendant’s instructions, a flight attendant came to check with her that Amy understood the importance of putting her own mask on before helping her children.  That’s how caregiving is.  Our first instinct may be to care for our family member before ourselves, but if we are incapacitated by the stress of the situation, we are of no help to our family.  You must look after your own needs first!

Stress is difficult to define because it is subjective.  What one person finds stressful, another person may not find stressful.  Stress is unavoidable and not a bad thing with the right mindset and self care.

A good place to begin is to do a self assessment – and don’t lie to yourself or others about how you are managing.

Deviation from baseline is what you want to pay attention to in your self assessment.  Consider these personal attributes:
* If normally you have a good memory but lately you can’t remember anything – you may be overstressed.
* If normally you are in good spirits but lately you are short tempered or moody – you may be overstressed.
* If normally you are well coordinated but lately you are dropping things constantly – you may be overstressed.
* If normally…  Can you identify areas where your normal is deviated from baseline?

We all wear many hats, but how do they affect your stress level?  What is the cost to your health, family or workplace?  If you are a tired, cranky employee, you come home and are a tired, cranky Mom/Dad/daughter/son etc.

Homework:  Take 10 minutes every day to do something you enjoy.  If you have more time to devote to your own joy – do it!  This homework is especially for those of you who feel as though you don’t even have 10 minutes to take care of yourself.
Run, walk, read, meditate, watch a video w/a coffee, tea or soft drink, call a friend or relative (but don’t talk about caregiving!)

What is compassion fatigue?  For today’s talk, it encompasses vicarious traumatization, compassion fatigue and secondary traumatic stress, as follows:

* Vicarious traumatization – a state of tension and preoccupation with someone whom you have helped or are helping.  It can manifest either as reliving (PTSD) a traumatic event another experienced – OR – you begin to avoid all reminders of a traumatic event.

As an example: when Amy was working in a group home she was listening attentively to a client’s traumatic event.  In the middle of that conversation Amy’s cell phone rang.  She grabbed it and swiped the screen to silence it.  Henceforth, whenever her cell phone rang she recalled the trauma her client was describing.

Having a vicarious traumatization response happen up to a few months from the original hearing of the trauma is normal for those who devote themselves to caregiving because they tend to have a higher threshold of empathy.  Empathy is the ability to put yourself into another’s shoes.  You should be concerned if you experience a vicarious traumatization response longer than a few months or it begins to deviate your behavior from your baseline.

* Compassion fatigue – used to just be called, ‘burnout.’  It is a state of tension and preoccupation with someone whom you are taking care of, a traumatized survivor.  Generally a work related secondary exposure to an extremely traumatic, stressful event.  ‘Work’ includes unpaid, family caregivers, as they are still at risk.

* Secondary traumatic stress is about being afraid.  This is especially seen in child protective services workers where they begin to believe everyone is out to threaten them and their family.  That is an extreme example of how stress affects your behavior.

The term, ‘burnout,’ encompasses a range of degree all the way up to compassion fatigue.  In its simplest form burnout is a state of extreme dissatisfaction with your work.  It is a work related hopelessness and a feeling of being ineffective.

To distinguish between burnout and compassion fatigue.  Ask yourself, “Do you love the kind of work you’re doing?”  If the answer is yes, but you feel some of the symptoms Amy will describe, you may have compassion fatigue.

Symptoms of compassion fatigue:  Significant deviation from your individual normal in these areas are common symptoms of compassion fatigue.

* Emotional indicators – anger, irritability, sadness, depression, prolonged grief, numbness (not wanting to feel anything).  There are some incidents where the timeframe for grief is nearly infinite.  Amy is not talking about those circumstances.

* Personal indicators – isolation (pushing others away, not wanting to communicate), cynical, pessimistic, critical, mood swings, substance abuse (alcohol, drugs, food, sex, attention, TV binging) to fill a void, memory or concentration problems, self entitlement (justification of negative maladaptive behavior because of the things you do, e.g. social worker stays up all night with a client but the next day they are cranky with coworkers, e.g. someone who worked 60hrs in a week helping others, then announce they will be wasted all weekend)

* Physical indicators – general sickness, cold of flu symptoms, sleep issues, no energy, insomnia.  Note: Disruption of normal sleep patterns can cement PTSD symptoms because sleep is when the brain cleanses itself of traumatic events.  If you are not getting good sleep as a caregiver, you should make sleep a priority by trading the night shift with another caregiver so you do not further traumatize yourself and contribute to caregiver fatigue.

* Work indicators – avoiding certain people, missing appointments, suddenly becoming tardy frequently, lack of motivation, just ‘going through the motions,’ being a workaholic (certain personality type: when things get tough, they get tougher), becoming demoralized, feeling under appreciated or under-resourced (when those challenges of the job didn’t used to bother you)

Compassion fatigue can be arrested and treated at any time.  You just need to identify it to be able to move beyond it.

The typical trajectory compassion fatigue takes:

Phase 1 “Zealot” – full of enthusiasm, go the extra mile, handholding, extra care, willingness to do anything

Phase 2 “Irritability” – begin to take shortcuts, avoid people and conversation about work, make mistakes

Phase 3 “Withdrawal” – clients become irritants, enthusiasm disappears, avoid discussing your job, avoid people & work

Phase 4 “Zombie” – go through the motions, no humor, no fun, disconnected from emotions, lost compassion, lost hope

One student of Amy’s compassion fatigue said she is in phase 1 Monday, phase 2 Tuesday, phase 3 Wednesday and phase 4 Thursday and Friday.  Amy wonders how true that is for many people.  The idea is that if you can take care of yourself and find balance between what you need and what you need to do, you can be your best for both yourself and your care recipient.

One study found people who experienced growth after trauma, so they studied them to find out what they did differently.

They found 5 habits of resiliency that, when implemented daily, result in retraining your brain resulting in personal growth and longevity.

#1 – Physical resiliency: good sleep (6-8hrs, 5dys/wk), nutrition (Mediterranean diet), exercise (take stairs, park at edges of parking lots to get more steps in a day).  It is important to tell yourself that you are intentionally doing these things for your own well being because our brains are hard wired to recognize threats to our safety.  You have to reinforce the positives that you do for yourself to get the most benefit, to remind yourself to make these changes and to reinforce these new habits.

#2 – Spiritual resiliency: prayer, meditation and strong relationships (at least 1-2 people who know your good, bad & ugly)

#3 – Emotional resiliency: cry (releases endorphins which are natural pain relievers), laugh (laughing can relax you for up to 45 minutes, reduce risk of heart disease), give & get physical contact (increases oxytocin, making you feel more bonded to others)

#4 – Psychological resiliency: acknowledge your own personal victories (even if it is for something you do every day like put food on the table for your family.  Acknowledge that the meal is well balanced, it is on time, or that you dressed the table with a cloth or flowers.  Give yourself credit for a job well done throughout your day, every day)

#5 – Self Care: especially in your transition from work to personal time – take off your badge, change clothes, give yourself some music or meditation on your commute home.

Question and Answer

Q. A couldn’t believe her mother was living this long and wondered how long will caregiving for her mother go on?

A. Don’t feel any shame around that.  It is normal and doesn’t mean you love her any less, but that you have a constant demands on you and pressure.  Taking time to implement these habits of resiliency is important so you are not only giving your best, but you are your best.

Q. It is interesting to say that stress is a deviation from whom we really are.  In my case I always enjoyed gardening.  Now I don’t feel like it.  To relieve stress should I go back to gardening?


A. Don’t force yourself to do a therapeutic activity because that would have the opposite of the intended affect.  At the same time, our natural mechanism is to push away those things that used to bring joy.  It may be like exercise, most people don’t want to do it, but we feel great after we’re finished.  Try to bring gardening back into your life.  If you find you no longer enjoy it, even after you finish, move on to some other activity you can look forward to.

Q. Someone told a listener that the best way to relieve stress is to get yourself physically away from the stressful situation.

A. That can certainly help to some extent, but you want to make sure that you’re not just running from the situation.  It is not always possible to get physically away so finding moments when you can find stress relief in the middle of the day like through meditation, funny videos, taking a short stroll, reading, etc. is beneficial to your health, boosts your energy and improves your interaction with your care recipient.

Q. What do yo mean by physical contact?  Can it be with a pet or child/baby?

A. Absolutely! doesn’t matter if you are touching another person (of any age) or a pet.

Registration now open – Multiple System Atrophy Conference, Sept 28-29

Registration is now open for the Multiple System Atrophy Conference!  The conference is co-hosted by the MSA Coalition and Stanford University.  Brain Support Network will be exhibiting, providing volunteers, and speaking on the topic of brain donation.

Friday, September 28th, 10am-9pm
Saturday, September 29th, 8:30am-5pm

Hyatt SFO (in Burlingame, just off Highway 101)


Below, I’ve copied the agenda that the Coalition posted to its website.  Friday’s talks will focus on practical information for living with MSA, support services, and therapies. There’s a reception and dinner on Friday.

And Saturday’s talks will feature Stanford’s Kathleen Poston, MD,
movement disorders specialist, and Mitchell Miglis, MD, autonomic
disorders specialist. Other physicians from Stanford and various Bay
Area clinics will address topics of sleep, urology, bowel dysfunction,
etc. Researchers from around the US will give updates on the latest
MSA research.

The agenda doesn’t say but I believe registration opens around 9am on
Friday. The conference runs from 10am to 9pm on Friday. Registration
opens at 8am on Saturday. The conference runs from 8:30am to 5pm on

Register here

I don’t see a deadline for registration but I would think it’s several days before September 28th.

The Hyatt Reservations number is 800-233-1234.  The MSA Coalition’s room rate is $216/night.  A limited number of ADA rooms are available.



You can find the tentative conference agenda here:
(scroll down about half way)

Friday, September 28, 2018

[We are assuming registration begins around 9 a.m.]

10 a.m. – 10:15 a.m. Welcome by Stanford University Hosts and MSA
Coalition Board Chair

10:15 a.m. -11:00 a.m. Overview – MSA & Research 101 – Dr. Kathleen Poston

11:00 a.m. – 12:00 p.m. Support Group Meetings

12:00 p.m. – 1:00 p.m. Lunch

1:00 p.m. – 4:00 p.m. Afternoon Workshop Sessions

There will be multiple time slots with two or three sessions per time
slot and selected sessions will be repeated. Topics will ranch from
practical information for living with MSA, support services,
therapeutic approaches to address symptoms, and research information
and participation opportunities.

5:15 p.m. – 6:00 p.m. Reception

6:00 – 9:00 p.m. Dinner Program

Saturday, September 29, 2018

8:00 a.m. – 8:30 a.m. Registration & Breakfast

8:30 a.m. – 8:45 a.m. Welcome by Stanford University Hosts and MSA
Coalition Board Chair

8:45 a.m. – 9:45 a.m. Symptoms & Treatment Management

Movement Disorder Issues – Dr. Kathleen Poston
Autonomic Issues – Dr. Safwan Jaradeh and Dr. Mitchell Miglis
Sleep Issues- Dr. Mitchell Miglis and Dr. Michelle Cao

9:45 a.m. – 10:30 a.m. Medical Q & A

10:30 a.m. – 10:45 a.m. Break/Activity

10:45 a.m. – 11:45 a.m. Interdisciplinary Panel – Dr. Kathleen Poston
will facilitate a panel discussion among medical specialists in areas
such as urology, gastroenterology, and cardiology with specific
respect to MSA.

11:45 a.m. – 12:15 p.m. Panel Q & A

12:15 p.m. – 1:30 p.m. Lunch & Exhibits

1:30 p.m. – 3:00 p.m. MSA Research

Natural History Study & Update from 6th International MSA Congress
-Dr. Mitchell Miglis & Dr. Lucy Norcliffe-Kaufmann
Clinical Trials & Relevant Studies– Dr. Daniel Claassen
Research Highlights & Future Directions – Dr. Vik Khurana

3:00 p.m. – 3:15 p.m. Break/Activity

3:15 p.m. – 3:45 p.m. Research Q & A

3:45 p.m. – 4:00 p.m. Closing Remarks

4:00 p.m. – 5:00 p.m. Support Group Meetings

“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.



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. 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:
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