Advance Care Directive for Dementia (New York Times article)

This recent New York Times ( article is about the idea that the typical advance care directive doesn’t say much about dementia.  A physician recently developed a dementia-specific advance directive, which you can find here:

* Advance Directive for Dementia,

Two other resources are referred to in the article —

* The Conversation Project,
* Prepare for Your Care,

(I have previously posted about those resources.)

Here’s a link to the full article:

One Day Your Mind May Fade. At Least You’ll Have a Plan.
by Paula Span
The New Old Age/The New York Times
Jan. 19, 2018

Caregivers are often forgotten (article by widow of Gene Wilder)

This is an article by Karen Wilder, the widow of Gene Wilder who died in 2017 with Alzheimer’s Disease (AD). She writes for ABC News ( Karen Wilder describes her late husband’s symptoms and her role as a caregiver. Though this article is about caregiving for someone with AD, the messages apply to all caregivers. Basically, her messages are that caregivers are overlooked and caregivers can die before their loved ones.

She says: “But let’s not forget that other killer — the silent one that takes its victim even before the disintegration of brain cells does its own dirty work. I am speaking of the crisis that can kill the once-healthy loved spouses, siblings, friends and adult children of Alzheimer’s patients, who devote almost every waking hour of their lives (and also the nights) to caring for a person they love.”

She notes that: “40 percent of Alzheimer’s caregivers die before the patient according to a study done by Stanford Medicine — not from disease, but from the sheer physical, spiritual and emotional toll of caring for a loved one with Alzheimer’s.”

And she says: “It is a strange, sad irony that so often, in the territory of a disease that robs an individual of memory, caregivers are often the forgotten. Without them, those with Alzheimer’s could not get through the day, or die — as my husband did — with dignity, surrounded by love.”

Here’s a link to the article on the ABC News website:

Gene Wilder’s widow on what it’s like to care for someone with Alzheimer’s
By Karen Wilder
Jan 2, 2018, 12:36 PM ET
ABC News


2017 Accomplishments and Year-End Challenge Grant (for contributions by Dec. 31st!)

As 2017 ticks down, we hope you enjoy some quality-time with family and friends. We wanted to share our results for 2017. Plus, this is a great time to make a charitable contribution as other generous donors are doubling your contribution.


Brain Support Network (BSN) continues to pursue its three missions:
(1) create and disseminate information on LBD, PSP, MSA, and CBD to members (You are one of 450 Northern Californians on our network’s email list.)
(2) coordinate the local caregiver support group in San Mateo
(3) help any family with brain donation.

We (BSN volunteers and part-time employees) have kept busy in 2017:


Brain Support Network (BSN) continues to pursue its three missions:

(1) create and disseminate information on LBD, PSP, MSA, and CBD to members

(2) help any family with brain donation

(3) coordinate the local caregiver support group in Northern California

We (BSN volunteers and part-time employees) have kept busy in 2017:

* We sent out over 250 email updates, most of which focused on one of four specific disorders: LBD (Lewy body dementia), PSP (progressive supranuclear palsy), MSA (multiple system atrophy), and CBD (corticobasal degeneration). Many emails relate to caregiving and dementia caregiving.

* We published over 600 Facebook posts on similar subjects (because some people prefer Facebook).

* We served as a clearinghouse of information and support for network members.

* We have kept our web site relevant and up to date (e.g. our “Top Resources” lists for the four primary disorders and our blog).

* We organized 94 brain donations (a new record for BSN), most of which were delivered to the Mayo Clinic in Jacksonville. (Of course the year isn’t quite finished.)

* We hosted our largest-ever “Research Update and Practical Conference on PSP/CBD” in cooperation with the UCSF Memory and Aging Center on October 28, 2017, in San Mateo. Conference video and handouts are available.


This is the time of year when we ask you for assistance.

Five long-time support group members and two long-time BSN benefactors have offered a “challenge grant” to network members. Your charitable contributions through December 31st will be matched up to $8,000. Please help us take advantage of this opportunity and help make possible our efforts for the coming year.

If you mail a check, please write “match” on the memo line along with the name of the family member or friend that you are honoring or remembering. Or, enclose a note with that information. Make checks payable to “Brain Support Network,” and mail to BSN, PO Box 7264, Menlo Park, CA 94026. To count towards the challenge donation, checks should be dated and postmarked by December 31, 2017, Your check does *not* need to be received by this date.

If you make an online contribution (via credit card), please write the name of your family member/friend after selecting “in honor of” or “in memory of.” Please append “/Match” to the name of the person. To count towards the challenge donation, online contributions should be completed by Sunday, December 31, at 11:59pm California time.

Brain Support Network is recognized by the IRS as a 501(c)(3) tax-exempt charity and your donations are deductible to the extent allowed by law. Please know that any amount—$25, $50, $100, $250, $500, or more—is appreciated! Thank you for supporting our three missions!

Happy 2018 to you and your families!

Take care,
Robin (volunteer)
Brain Support Network CEO

“Hands-on Caregiving” – notes from two lectures

Hope everyone is enjoying warm holidays with family and friends.

In November 2017, the National Caregiving Conference was held in Chicago. Many of the sessions were webcast. Brain Support Network volunteer Denise Dagan listened to many of the sessions, including a session titled “hands-on caregiving.”

There were two speakers – Penny Patnaude, who calls herself a “caregiver strategist,” and pastor Bruce Hanson, former caregiver to his wife with diabetes.

The first part of Penny’s talk is aimed at those dealing with behavioral issues in the context of dementia. But the second part of her talk is about general caregiving.

I liked Penny’s suggestions on creating a support network for the caregiver. About friends, family, fellow church members, club members, and neighborhood children, ask yourself: “Who loves reading, playing cards, watching TV, going to museums, puzzles, music, knitting, painting, etc?” Can two people (different days/times) come over 2 hours each week to spend time with your loved one while you get some respite?

Penny introduced the topic of a “caregiver contract.” This is a formal agreement among family members to compensate a family member for providing care. You can read more about this type of contract here:

Denise’s notes about the two lectures are below.


Notes by Denise Dagan, Brain Support Network Volunteer

Hands-on Caregiving with Pastor Bruce Hanson and Penny Patnaude
2017 National Caregiving Conference
November 10, 2017

Penny Patnaude – Caregiver Strategist, LLC

Behavioral Difficulties:
– Wandering can be caused by a feeling of loss, make sure your loved ones receive plenty of exercise, limit caffeine, tea, soda and excessive napping.
– Ask physician for a sedative
– Activities throughout the day
– Paint walls and doors in same color makes finding the exit difficult
– Add pleasant circumstances into the environment (music, pet, fun)

Sundowning Syndrome:
– Use bright lighting in the late afternoon and evenings
– Avoid napping, keep consistent schedules
– Ask doctor for medication (you may have to try several & may not work at all)
– Meet them where they are, don’t argue or discount their hallucination/delusion. Use therapeutic fibbing, which is altering the truth to minimize agitation. Tell them whatever it takes to calm them.
– Distract them
– Add pleasant circumstances
– Avoid agitating topics

Eating Challenges:
– Bite size portions (cut before you serve)
– Finger food
– Ensure, carnation drinks, protein shakes
– Smoothies with pulverized veg & fruits
– Hydrate often
– Large grip utensils & dinner wear (suction cups on the bottom of bowls & plates)
– Ice cream, sweets, soft items easily digestible (non diabetics)
– Salty foods (non high blood pressure)

– Older generation didn’t bathe often when they were young.
– Make the room, clothes & water warm
– Prepare ahead of taking them into the bathroom (clean towels)
– Pleasant aroma
– Talk soothingly
– Use a sitting stool with a slide seat (soap it so they slide into tub easily)
– Let them keep their undergarments on.

– Remove spoiled food
– Remove throw rugs
– Remote cords and cables to prevent tripping
– Keep pathways clear
– Get rid of clutter
– Install gas shut offs
– Use ID tools. Project Lifesavers (GPS). Sheriff’s Dept. may be able to help with this.

Negative feelings (in the caregiver):
– Overwhelmed
– Anger
– Agony
– Stress

Support Tribe:
– Identify skills of loved ones, friends, members of church, clubs and kids.
– Ask yourself, “Who loves reading, playing cards, watching TV, go to museums, puzzles, music, knitting, painting, etc.” Then, enlist those people to do those things with your care recipient.
– Ask for 2 hrs/week from at least 2 people to give yourself some respite.

Caregiver Contract Guide:
– Include the names of all people involved
– What services will be provided by each person
– When will services take place
– What are the service fees
– How often will the charges occur

Caregiver Contract Benefits:
– Can be used to spend down care receiver’s money so they qualify for medicaid.
– Provide financial relief to the caregiver
– Keeps everyone responsible.

To learn more about Caregiver Contracts:

Pastor Bruce Hanson Former caregiver of his wife who has passed away. She was an insulin dependent diabetic when they married. He’s a technical guy so he took care of her diabetes equipment. Over time her diabetes and overall health worsened dramatically. He promised never to put her in a nursing home. He turned their house into a hospital with lifts and other equipment.

Learn what your insurance company will and won’t cover and be prepared to fight to get what they should be covering.

Learn about Medicare and Medicaid. They won’t tell you what they will cover unless you know to ask for it and how.

Learn where to find equipment. This is even more difficult when you live in a rural area, like they did.

Which ambulance service can you use? Which hospital is that insurance company going to take you to? Once you are at one hospital it is nearly impossible to move to another one.

Need some way to keep careful track of all the different doctors, medications, medical history, pharmaceutical history, etc.

Keep together all the information you will need for emergency room visits, and keep it available to travel with the care recipient.

Personally, he stayed out of her personal/private care, but left that to a female caregiver. He helped with lifting and managing her overall care.

Learn how to do all in-home care necessary to prevent having to transfer her to medical facilities whenever possible because of their rural location.

The goal is to provide care in the home so the person needing care is as comfortable as possible. Be persistent and resourceful. Get involved with your state/federal legislative policy. Don’t be faint of heart. Don’t leave a hospitalized care recipient alone at any time. Be their advocate.

“If you can’t get in the front door, try the side door, the back door, the garage door, and if you can’t get into any of them, make a door.”

Sometimes, you make mistakes. You’re only human. The flip side is, if you aren’t there doing everything for them, who would be?

“The Long Goodbye: Coping With Sadness And Grief Before A Loved One Dies”

This is a good article from Kaiser Health News ( about anticipatory grief:

Navigating Aging
The Long Goodbye: Coping With Sadness And Grief Before A Loved One Dies
By Judith Graham
Kaiser Health News
December 21, 2017

Suggestions for coping including:  acknowledge your feelings, talk opening, communicate sensitively, lean in, and seek support.


Navigating Aging
The Long Goodbye: Coping With Sadness And Grief Before A Loved One Dies
By Judith Graham
Kaiser Health News
December 21, 2017

For years before her death at age 96, Nancy Lundebjerg’s mother underwent a long, slow decline.

Arthritis made it hard for Margaret Lundebjerg to get around. After two hip surgeries, she needed a walker when she was out and about.

Incontinence was a source of discomfort, as was the need to rely on aides to help her perform daily chores.

Little by little, Margaret became frail and isolated. “There was a sadness to seeing my mother’s circle of life become diminished,” said Nancy Lundebjerg, 58, CEO of the American Geriatrics Society, who wrote about her experiences in the organization’s journal.

The anguish accompanying aging isn’t openly discussed very often, nor is its companion: grief. Instead, these emotions are typically acknowledged only after a loved one’s death, when formal rituals recognizing a person’s passing —the wake, the funeral, the shiva — begin.

But frailty and serious illness can involve significant losses over an extended period of time, giving rise to sadness and grief for years.

The loss of independence may be marked by the need to use a walker or a wheelchair. The loss of a cherished role may dishearten an older woman who is no longer able to cook dinner for her extended family, gathered at the holidays. The loss of shared memories may be painful for adult children when their older father is diagnosed with dementia. And these are but a few examples.

Looming over everything is the loss of the future that an older adult and his or her family imagined they might have, often accompanied by anxiety and dread.

This pileup of complex emotions is known as “anticipatory loss.” “The deterioration of function, disability and suffering have their own grieving processes, but helping families deal with that isn’t built into the health care system,” said Dr. John Rolland, professor of psychiatry at Northwestern University’s Feinberg School of Medicine and author of “Families, Illness and Disability: An Integrative Treatment Model.”

Rolland and several other experts offered advice on how to deal with difficult emotions that can arise with frailty or serious illness:

Acknowledge Your Feelings

 Grief starts the moment someone with a serious illness receives the diagnosis,” said Tammy Brannen-Smith, director of grief and loss services at Pathways, a hospice in Fort Collins, Colo. But it doesn’t stop there. Each time a capacity is lost — for instance, an older adult’s ability to negotiate stairs, to drive or to manage household finances — sadness and grief can arise afresh. Brannen-Smith encourages people to acknowledge their feelings and try to “normalize them, because people don’t understand that everyone goes through this.”

Talk Openly

When families avoid talking about an aging parent’s frailty or serious illness, the person with the condition can become isolated and family relationships can become strained.

“My view is, you’re better off trying to get through whatever you’re facing together,” Rolland said.

When Rolland works with couples who are dealing with multiple sclerosis, for instance, he asks them to make a list of things they’d like to discuss but don’t. “Usually, there’s about a 75 percent overlap, and it’s a tremendous relief to most people to find out they don’t have to keep things locked up inside,” he said.

“People who are facing serious illness think about what might lie ahead all the time,” Rolland said. “For a family member not to bring this up, for everyone to be off in their own grieving pockets, alone, isn’t helpful.”

Communicate Sensitively

Abigail Levinson Marks, a clinical psychologist in San Francisco, regularly works with adults who have brain tumors, which can alter their thinking and wipe out their memories, as dementia does for millions of older adults.

“People with these conditions aren’t the same as they were before, but it would be heartbreaking for them to know that you didn’t see them as the same person,” she said. “So, the truth becomes something that cannot be named and that everybody avoids, for fear of shaming the person.”

 In her practice, Marks asks “people to share what each person is going through and not worry about protecting each other from what they’re feeling,” she explained. “Because protecting each other leads to feeling more alone and magnifies the feelings of loss.”

For a caregiver of someone with dementia, that might mean saying,“Sometimes you might see a look crossing my face and think that I’m disappointed. It’s not that I’m upset with you. It’s that I’m sad that there are things that happened in our past that we don’t remember together.”

For someone who has suffered a stroke, it might mean encouraging them to open up about how hard it is to lose a measure of independence and be seen as someone who’s disabled.

Lean In

How people respond to sadness and grief varies, depending on their personality, past experiences, the relationship they have with the person who’s frail or ill, and the nature of that person’s condition.

“Sadness can make you cherish a person even more and appreciate small moments of connection,” said Barry Jacobs, a Pennsylvania psychologist and co-author of “AARP Meditations for Caregivers.”

Some people, however, can’t tolerate feeling this distress and end up distancing themselves from someone whose health is declining. Others might show up in person but focus on tasks instead of allowing themselves to connect emotionally.

If possible, lean in rather than letting yourself become distant. “Cherish the time that you have together,” Jacobs said. “Rather than pulling back, move toward the person and be as engaged with them as possible, particularly on an emotional level.” In the end, connection eases the pain of grief, and you’ll be glad you had this time with the person.

Seek Support

“Don’t confront grief alone or in isolation,” said Alan Wolfelt, founder and director of the Center for Loss & Life Transition in Fort Collins, Colo. “Have people around you who are supportive and who will be present for you” — family members, friends, people from a support group, whoever is willing to be a companion through your journey through serious illness.

Ultimately, this journey will help shape how you ultimately experience a loved one’s death.

Wolfelt describes mourning his mother twice. “The day she was diagnosed with Alzheimer’s and all the days I watched her dwindle. And then, the day she died, I had to begin mourning again, at a whole other level.”

But Lundebjerg of the American Geriatrics Society found a measure of peace when her mother finally passed away, after two seizures and the family’s decision not to pursue further treatment. “It was OK that she died because she was ready — she had made that very clear. And I had come to peace, over a very long time, with the fact that this was going to be coming.”

KHN’s coverage of these topics is supported by John A. Hartford Foundation and Gordon and Betty Moore Foundation.

Questions to ask a potential agency caregiver

The Parkinson Foundation ( has a useful worksheet on questions to ask an agency caregiver during the hiring process.  Though the worksheet is published by the Parkinson Foundation, there is nothing Parkinson’s-specific about the worksheet or questions.

As the worksheet says:

Hiring someone to take care of your loved one is a decision that must be made with careful consideration. There are many questions you can ask to make sure the agency can meet your needs, as well as questions to make sure the agency and its employees are competent and have the proper training,
licensing and insurance.

Here’s a link to the worksheet:



Coping with problem behaviors (DICE approach and a useful caregiver guide book)

The NIH (National Institutes of Health) hosted a two-day summit in October 2017 on research that is needed to improve quality of care of persons with dementia and their caregivers.  The summit was streamed live.  The summit was of most interest to those involved in research.  Only a few useful ideas were shared, including the DICE approach, which we’ve heard about previously.  It is an approach to responding to difficult behaviors.


Describe – the who, what, when and where of situations where problem behaviors occur (the physical and social contexts)

Investigate – current dementia symptoms, medications, sleep habits, etc. that may be contributing to difficult behavior.

Create – a plan to prevent and respond to difficult behaviors by changing environment and educating the caregiver.

Evaluate – how well the plan is being followed and how it is working.  Make necessary adjustments that work for the family.

Recently, Laurie White, a social worker in the North Bay, sent me a copy of her excellent guide for family caregivers on “Coping with Behavior Change in Dementia” (  (The book is to be shared within our local support group.)  Basically, this is a handbook to implementing the DICE approach.  Laurie and co-author Beth Spencer begin by saying that the family caregiver must become a “detective” to understand the cause of these behaviors.  They address coping with the 4As – anxiety, agitation, anger, and aggression – among other problems.  One guide book gives lots more helpful ideas to dementia caregiving than an entire two-day NIH conference!



Ideas from Technology Panel at National Caregiving Conference

Last month there was a National Caregiving Conference in Chicago.  Portions of the conference were broadcast over the web.  Brain Support Network volunteer Denise Dagan watched the panel on technology, and shared her notes.  The panel was a presentation by four technology developers who presented a number of products — both software apps and hardware (cameras, sensors, pill dispensors, etc.) — to help caregivers do the best for care recipients.

Here are a few of the technology items described:

*  pill dispenser
* HawkCam:  camera with speaker so you can monitor visually
*  health alarm in homes without Internet
* Smokey:  a mobile app that detects when a smoke alarm is going off
* Reminder Rosie:  a service from
* Great Call:  phone provider ( has senior focused phone with limited buttons
* Mother – a product by ( that connects to your wifi as a hub with peanut-shaped sensors around the home to detect motion, heat, etc.

See Denise’s notes below.


Notes by Denise Dagan, Brain Support Network Volunteer

Technology Panel at 2017 National Caregiving Conference
Panelists:  Claudia Cook, Carl Hirschman, Andrew Koch and Jackie Schwabe
Moderator:  Denise Brown
November 10, 2017


Claudia Cook kicked off the panel by talking about calling your family member to see how they are doing and hearing, “Fine.”  There is technology to provide more information than ‘fine.’

There are not enough caregivers for the number of those needing assistance now, and the elderly population is aging, so the imbalance is only growing.

Caregivers do want technology to assist with their work but the barriers include cost, learning curve, and hassle factor.  Claudia has created a resource guide to what’s out there and how simple it can be to include some technology into your caregiving.  Claudia implemented some technology for her aunt with Parkinson’s to test them.

Pills & Beyond + = Better Medication Management.  The compartment with the pills they need to take now blinks, alarms and reports if/when pills are removed from the compartment.

HawkCam:  camera with speaker so you can monitor visually.  $129 on Amazon.

LivHOME (, a home care agency, has implemented Connect Advisor to do a video call with the client to reinforce the work of their caregiving staff’s instructions to the client.  Connect Advisor is especially helpful with clients who have dementia, but can be used by family caregivers to check in on distant family members, as well.  This can also be set up with alarms and reminders, a care journal, photos for social interaction between family members and a calendar.


Carl Hirschman is founder of CareTree (  He’s been in tech a long time but developed CareTree when his mom complained about carrying around a heavy 3” binder with all his grandmother’s health information.  The format has a similar look and user interface as Facebook since people are already familiar with that.  Communication between family members or paid caregivers is centralized because you enter the message into CareTree and CareTree texts and/or emails to the entire care team.  Includes a shared calendar, HIPAA security compliant, 1-Click EMR Access to log in to any doctor/cliunic patient portal to read appointment summaries, instant fax messaging to doctors.  Care Tree is working on a program for users to make suggestions for future tech development.  For critical/crisis events there is a care assessment that builds a care plan for you, recommending best practices, technology, POLST, etc. is online shopping for medical technology like pathway lighting, TV tray with a built-in grab bar, etc.

Onkol ( connects Blue Tooth devices in homes without internet and is a health alarm.

Coro Health ( – app for music therapy for dementia care

iGeriatrics – mobile app by the American Geriatrics Society with all that organizations information at a touch.  Search on – diet restrictions helps you look up food to see if it fits in your special diet

Smokey – an app from CleverLoop ( that detects a smoke alarm going off in a residence and alarms on your phone.


Jackie Schwabe has been a programmer for many years, not necessarily in healthcare.  A family crisis brought her to develop an app to help her find caregiving tech, because you don’t know what you need until you know what you’re looking for.

These tools are good for both Alzheimer’s and autistic people:

Reminder Rosie ( – verbal reminders for those with memory issues to remember things

Leap Frog – pen that talks

SafetyNet Tracking – GPS to find lost loved ones


Andrew Koch is a current family and professional caregiver.  Current client has a progressive motor-neuron disease.  Together they did some soldering and wiring of his wheelchair, recently.

4 Promises of Technology:
I will foster independence.
I will help yo make meaning in life.
I will fail you.
You will need a back-up plan.

Two perspectives on Technology:
Handmade   – vs – machine made
Earth made   – vs – man made
Decomposes   – vs – non-biodegradable
I can repair if broken – vs – throw-away society by Dr. G (Andrew’s client with progressive motor-neuron disease).  Video at shows Dr. G’s home made lifts to transfer in/out of bed, up/down stairs

Dr. G has also made devices to move blankets on his bed to cover and uncover him.


Denise Brown brought a Jibo robot for the family home that takes photos/video, can be programmed to give reminders.  Jibo converses, like Siri.  Becoming familiar with technology increases our trust in technology.  $899 on Amazon.


“Here’s how I use it” conversation is helpful to learn what’s available or how to solve some caregiving problems with tech.

Q. Father keeps messing up the tech that’s in their home, now.  How can I possibly put more tech in their home?!  Parents also resist tech in the home because they don’t want to be spied on.

A. Great Call – phone provider has senior focused phone with limited buttons.  The help button dials customer support.

Caption Call transcribes phone conversations for the hard of hearing.

Arlo ( – battery-powered camera has no buttons to mess up.

Guided Access – an iPhone feature; triple click the home button on your phone gives you restriction to accessing features on your phone for kids/seniors.

Grandpad ( – targeted to seniors with one-button operation (by ComfortKeepers)

Roomba – vacuums for you.

Mother – a product by ( that connects to your wi-fi as a hub with peanut-shaped sensors around the home to detect motion, heat, etc. and send you a text that there could be a problem with the person being monitored.

Put cameras in the home to communicate with grandkids, then use the camera system to check on their well being, too.

Get buy-in on bringing tech into the home by selling it as fostering independence.


“Understanding Challenging Situations: Putting Together Pieces of a Puzzle” – lecture notes

In November 2017, the National Caregiving Conference was held in Chicago.  Many of the sessions were webcast.  Brain Support Network volunteer Denise Dagan listened to many of the sessions, including this keynote by Teepa Snow, a giant in the dementia care community.  Teepa’s topic was “Understanding Challenging Situations: Putting Together Pieces of a Puzzle.”  She spoke for two hours (so this is a long email).

The focus of Teepa’s presentation is that interactions have two sides — the caregiver’s and the care recipient’s. Teepa’s message is that if the caregiver is kind and respectful, the caregiver is likely to be re-paid with cooperation from the care recipient.

Denise says:  Teepa began her talk by explaining the various parts of our brains and what they do for us when we are healthy.  Then, she acted out common interactions (bathing, dressing, feeding, etc.)  caregivers have with those who have dementia.  Teepa noted what parts of the brain are activated by these interactions.  She acted out how a person might respond when part of the brain is damaged by dementia.  Teepa shared tips for how the caregiver can change tactics since the person with dementia is unable to change.  The goal is to not trigger unwanted responses.
Denise’s notes are below.

Notes by Denise Dagan, Brain Support Network Volunteer
Speaker:  Teepa Snow
Topic: “Understanding Challenging Situations: Putting Together Pieces of a Puzzle!”
National Caregiving Conference
November 11th, 2017 
Teepa’s family has a history of caregiving and she has a curiosity about brains.  We don’t pay much attention to our brains as long as it works right.
About 50% of the time the person with dementia doesn’t thing there’s anything wrong with them because of the area of the brain that’s damaged.
– The frontal lobe handles sensory intake and processing.  It controls cognitive skills, emotional expression, problem solving, memory, language, judgement and sexual behavior.
– The primitive brain controls our primal instincts (survival, dominance, mating).
– The left amygdala is a threat perceiver,
– The right amygdala is your pleasure seeker
When a person with dementia goes overboard seeking what they like, we perceive it as inappropriate behavior
When a person with dementia doesn’t get what they like or they become uncomfortable (need to pee, thirsty, hungry) but are told they cannot satisfy that want when they want it, they may quit using their language center (right side of the brain) and begin using the left side of the brain (where all swear words are stored) and become verbally abusive.  If a verbal response is unsuccessful in satisfying their want, the only response left is just fight or flight so they may become physical.  They may hide (from you) and seek (assistance or a way to get rid of you).
An example of our most common approach to a person with dementia who smells badly, for example, is to say, “You smell bad.  Let me help you.”  A person with dementia has lessened sensory input so they don’t notice and don’t want you in their face so they resist (left amigdala threat perceiver).  You may be approaching them for a shower but they have had a bad experience with someone else trying to get into their pants (for sex?) so they feel threatened.
When you impose your help upon them and you get into a struggle over their resistance, your right amygdala is driving your own behavior (wanting to help).  If you stop forcing your agenda upon them they have nothing to put up resistance to.  If you continue to press your agenda to shower right now you could create another negative emotional memory about someone getting into their pants and an even stronger resistance against letting anyone remove their clothing and get them into a shower, causing a permanent bathing issue in your home.
Historically, shaking hands shows you are unarmed.  Shaking dominant hands (usually right hand to right hand)is holding each other’s center of skill. While you are shaking hands with someone they cannot reach for a weapon.  The webbed area of the thumb also produces oxytocin, the friendship hormone.  Pump that area of the hand you are shaking a few times to release it.  Oxytocin makes the person you’re shaking hands with like you better.  Left handed fighters are very prized because they can effectively stab the person they are shaking right hands with.  People tend to squeeze when they shake hands.  Those with dementia find it pleasurable to squeeze so they will squeeze harder because it is pleasurable (right amygdala).  This can be painful for caregivers.  Instead, use a ’soul shake’ where they are holding your palm.  It doesn’t hurt you as much, you can apply pressure to their palm (which they like), and you still have your fingers free.  You can make eye contact and use your fingers to help them with their buttons, glasses, etc.  This is called hand under hand assistance.  This nonverbal tool to communicate with them how you want to help them   Be sure to hold hands with their dominant side because you’re going to do the task WITH them, not TO them and there will be less resistance to begin with and no resistance once they learn that this is how you help them.
From the perspective of the person with dementia, “Don’t rob me of what I can still do, help me do what I still can do.” Eventually, the entire brain will be affected by the disease and I won’t be able to do anything of myself.  The muscles will all turn on in late stages of the disease and the wrists will drop, fingers will close, shoulders will pull toward the front, and they will sit backward, their head may be back or forward and the legs will come up to the chest and (maybe) to the inside.  All this flexion is also happening in the ribcage, causing discomfort.  In this situation caregivers will try to clean the person with dementia by unwinding the body to get to armpits, crotch, etc. and the person can still kick, hit and spit to defend themselves.  The person with dementia is physically hurt by this pulling on their limbs and feels threatened but they cannot speak.  When they defend themselves physically (kick, hit, spit) we tell them to stop fighting us.  Instead, put deep pressure on their shoulder and begin to rub in a circle beginning at their shoulder blade and rub down the arm.  Press the arm forward and across the chest to get your hand under the armpit to clean it.  Prop that arm on a pillow to allow the armpit to air dry.  Cover with a blanket so they don’t get chilled.  Most nursing instruction begins on dummies and does not include an understanding of the dementia experience of tricks, like this, to care compassionately.  Now that you know this you have a new agenda (to teach the nursing staff caring for your family member) and the caregiving staff will resist you forcing your new knowledge upon them and they will resist.  Before they will listen to you they need to have an interest in your information.
When you want to draw attention to something hold hands with them in the ’soul shake,’ pump their palm to release oxytocin and use your other hand to gesture toward what you want them to look at.  You can also use this to get them to stand by gesturing and leading them with the hand hold.  Reinforce their cooperation with enthusiasm and genuine thanks, rather than speaking to them like they are a dog or a three-year-old.  Treating them like they are a dog or child makes them want to get away from you and be uncooperative.  Earn their trust by treating them in a gentle, cooperative way rather than forcing your schedule or doing everything for them.  It makes them so much less anxious when you do tasks with them as much as possible.  These nonverbal methods work better than words because their reasoning is messed up.
If you forget and they begin to resist and become agitated, stop immediately and apologize face-to-face.  Speak from the heart.  You don’t even need to use words because in late stages words are hard for them to process.  You can, actually, apologize with just your facial expressions.
When someone with dementia is distressed they will breathe heavily, their voice will rise into the upper register and they may begin to stutter/stammer and not be able to express themselves fully.
As caregivers we accuse those with dementia that something is wrong with them, but that person is unable to recognize it.  In fact, a person with dementia is losing skills and we need to develop our own skills to help them.
What Causes Distress or Resistance?
There is a mis-match between what we expect versus what happens.  We’re holding on so tightly to what we had, we don’t realize its already gone and we can’t be open to recognizing what we still have.  Let go of what you can’t have.  Figure out what skills the person with dementia still has and help them continue doing those things.  Appreciate the special bond with have had with them over the years (shared humor, memories, etc.).
*** People need to have something they like every day.  If caregivers are not getting something they like every day they are enduring this disease.  Our right amygdala is not being satisfied and we live in a constant state of anxiety and/or depression.  Caregivers engage in behavior that is satisfying (carbs, sugar, caffeine, nicotine) to help us cope.  Combined with not taking the time to exercise, our health suffers.  Caregivers need talk support and a break from the caregiving trenches so that we can still find the person we knew and once loved and to look after our health.
Extroverts tend to touch what they see in a socially acceptable manner, but dementia keeps the brain from restraining itself by social boundaries.  People with dementia become uninhibited.  Caregivers may stop taking the person with dementia out and stop visitors from coming over in an attempt to keep people from seeing this embarrassing behavior.  Sometimes, people with dementia will sneak out or sneak around so they can do things to satisfy their brain’s urges because they know you will stop them from satisfying those urges.  That can lead to putting a person with dementia into a home where “there are people who know how to care for them.”  Thing is, in most places the staff is not trained well.  You know how to care for them better.
We can learn to compensate for these behaviors to meet the likes, wants and needs of our family member.  Remember, no matter where they live they will engage their fight or flight response if those needs are not met.
People are like RVs.  They don’t last forever.  We have to take care of our RV (physical, emotional, sensory).
Old RVs don’t work as well as they used to (vision, hearing, movement, digestion, thinking speed – all decline).
People with dementia have high risk of anxiety and dementia.  Can be treated by Rx without recognizing the cause is actually brain changes; the left amygdala is feeling threatened or the right amygdala is not being satisfied.
Teepa showed brain scan slides identifying the brain structures she’s been talking about and showing how they become inactive over the course of Alzheimer’s (and other dementias), resulting in challenging behaviors.
Pieces of the challenging situations puzzle:
1. I am who I was.  Now I’m different.  Accept me for who I am now.  Stop trying to make me how I was.  Let go of what you can’t have.
2. We are who we’ve always been until we choose to be different.  Caregivers have choice.  Don’t be the primary caregiver if it is not for you.  Be the care manager, instead.  Find others to do the hands-on work.
3. If I don’t move with you I will move against you.  That is the struggle between the caregiver’s and the care receiver’s amygdalae.
4. I’ve got brain change.  It was not of my choice.  I may have more than one pathology damaging many parts of my brain.
5. It only takes one person pushing the button for a person with dementia to be triggered.
Some individuals in your family may have to find another role in the caregiving situation away from the person with dementia.
6. The environment in which both of us exists affects behavior.  Remove stressors in the environment (noise, mirrors, shadows, chill, family members who cannot adapt their behavior to accommodate the person with dementia, etc.).  Create a safe area to dance, garden, walk, soak up some sun, etc.
7. How will I fill my time?  If caregivers are not directing, a person with dementia will occupy themselves in socially unacceptable or dangerous ways.
4 F’s of a beneficial environment:
Forgiving – both people and an environment can be unforgiving.  Remove those stressors.  Create a safe area for activity.
Understand they are not making a mess on purpose.  They are not recognizing objects for their intended use, but instead are enjoying them as a sensory experience.  They may be finger painting with ice cream or poop.  They no longer have accurate sensory processing so poop smell doesn’t mean anything to them.  They are even likely to taste the poop.
Arranging their environment for safety is tricky because it has to do with their sensory perception.  They use their dominant side to step with and in doing that they are more stable on their feet.  In all your talking and directing without noticing what they are doing and how, you may trip them by not allowing them to use their dominant side. You need to support how they’re doing something.  They are more likely to get hurt or be uncooperative when you are trying to get them to do something your way in your time or at your speed.
Some last minute thoughts:
– They are likely to step over things that aren’t there.
– They are likely to step around something black on the floor.  They perceive it as a hole?
– If you don’t want someone wandering, paint interior doors the same color as the walls.  It makes them harder to find.
– They are more likely to cooperate with dressing or bathing in a warm environment.
– Glass and styrofoam cups don’t work for people with dementia because they can’t tell how tightly they are holding it and are likely to break them with too much pressure.

“Don’t Go At It Alone: Navigating Resources for Higher Levels of Care” – lecture notes

Avenidas (, a local senior center in Palo Alto, CA, hosted a caregiver conference in late October 2017. Brain Support Network volunteer Denise Dagan attended the conference and shared notes from several of the talks a few weeks ago. One of the panels she attended was titled “Don’t Go At It Alone: Navigating Resources for Higher Levels of Care.”

There were three panelists:
* a social worker from Avenidas
* a representative from a local nursing agency
* a representative from the Avenidas adult day health program

Though the nursing aging and adult day health program are both in Northern California, the information shared applies nationally.

Denise’s notes are copied below.



Notes by Denise Dagan, Brain Support Network Volunteer

Panel Topic: “Don’t Go At It Alone: Navigating Resources for Higher Levels of Care.”
Avenidas Senior Center Caregiver Conference
October 21, 2017

The first panelist was Emily Farber with Avenidas.

Her first tidbit of advice for caregivers was to keep a checklist of things you need to do. Mark items off as you get them done. This helps keep your mind focused on action items, rather than swirling with all your care recipient’s needs – both present and future.

She also reminded caregivers that members of their caregiving team can include:
– long distance members to help with things like taxes, insurance phone calls, online banking, etc.
– a Geriatric Care Manager. A professional whom you hire to keep track of and organize your care receiver’s medications, appointments, specialist referrals, second opinions, etc.
Avenidas does provide geriatric care management.
– home care agency.

The second panelist was Melissa Fisher from Nurse Registry, a private pay nursing service.

In the Bay Area, Nurse Registry provides only licensed, skilled Registered Nurses (RN) at $95/hour or Licensed Practical or Vocational Nurses (LPN or LVN) for $75/hour, both with a 2 hour minimum.

Infusion therapy must be performed by an RN. Otherwise, both licensing can perform the same tasks.

They are usually hired as supplemental to a home care agency. [This is partly because in CA (and many other states) the Certified Nursing Assistants (CNAs) that home care agencies send to help with bathing, dressing, etc. are not licensed to dispense mediation. Unless family or friends are available to fill medicine trays for in-home care, an LPN/LVN or RN must be hired to do so.]

Nurse Registry is also an excellent resource for:
– Post-operative care at home as an alternative to a rehab or subacute facility.
– Education of in-home medical care until the family gets the hang of injections, oxygen tanks, IVs, etc.
– Hands on care for times when family is unavailable (nights, working hours, etc.)

The last panelist was Tom Pamilla, the director of Avenidas Rose Kleiner Center.

Tom gave a short talk on the benefits of having your family member attend Avenidas Rose Kleiner Center. Avenidas Rose Kleiner Center is an adult day health program as opposed to an adult day program.

Both types of programs provide social stimulation and supervision, but Avenidas adds:
– Nursing
– Physical therapy
– Occupational therapy
– Speech therapy

In addition Avenidas has a social work staff that helps caregivers by:
– Helping caregivers develop a care plan for the Avenidas participant.
– Running support groups for long term caregivers.
– Providing a back-up plan for supervision of care recipients, and caregiver respite.

Because Avenidas Rose Kleiner Center follows an adult day health program model, they are able to accept participants who are blind, frail, at high risk for falling and with dementia.

A typical day at Avenidas Rose Kleiner Center begins with receiving participants who are either dropped off by family or arrive via VTA ACCESS Paratransit program. Staff serves a light breakfast, followed by either a discussion of current events, a travel log, artwork or a visit from the neighboring preschool children, then they serve lunch followed by a musician or other entertainment before being picked up by family or VTA.