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:

* MedMinder.com:  pill dispenser
* HawkCam:  camera with speaker so you can monitor visually
* OnKol.net:  health alarm in homes without Internet
* Smokey:  a mobile app that detects when a smoke alarm is going off
* Reminder Rosie:  a service from parentgiving.com
* Great Call:  phone provider (greatcall.com) has senior focused phone with limited buttons
* Mother – a product by Sen.se (sen.se) 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.

Robin
_____________________________

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

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 + MedMinder.com = 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 (livhome.com), 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

Carl Hirschman is founder of CareTree (caretree.me).  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.

CareTreeMarketplace.com is online shopping for medical technology like pathway lighting, TV tray with a built-in grab bar, etc.

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

Coro Health (corohealth.com) – 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 GeriatricsCareOnline.org.

MyFitnessPal.com – diet restrictions helps you look up food to see if it fits in your special diet

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

JACKIE SCHWABE

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 (parentgiving.com) – verbal reminders for those with memory issues to remember things

Leap Frog – pen that talks

SafetyNet Tracking – GPS to find lost loved ones

ANREW KOCH

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

Makeyourownlifts.com by Dr. G (Andrew’s client with progressive motor-neuron disease).  Video at www.youtube..com/watch?v=ocsGwnUXb2k 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

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.

QUESTION & ANSWER

“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 (arlo.com) – 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 (grandpad.net) – targeted to seniors with one-button operation (by ComfortKeepers)

Roomba – vacuums for you.

Mother – a product by Sen.se (sen.se) 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.
Robin

————————-

Notes by Denise Dagan, Brain Support Network Volunteer
“Understanding Challenging Situations: Putting Together Pieces of a Puzzle!”
Speaker:  Teepa Snow
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:
Friendly
Familiar
Functional
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 (avenidas.org), 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.

Robin


 

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.

“Grit, Grace, and Resilience” in dementia caregiving – Webinar Notes

During the summer of 2017, Family Caregiver Alliance (caregiver.org) hosted a 75-minute webinar with tips for being a successful caregiver, with a focus on caregiving in the context of dementia. The speaker was the terrific Sarah Dulaney, RN, with UCSF’s Memory & Aging Center.

A recording of the webinar can be found on the Family Caregiver Alliance YouTube site here:

www.youtube.com/watch?v=AHHvr3QUOVE&feature=youtu.be

Of course, one of Sarah’s tips was accepting what you cannot change. Other tips included:
* Adapt your environment to support safety and function.
* Communicate with compassion, playfulness, and respect.
* Create a routine that includes exercise and meaningful activities.

Brain Support Network volunteer Denise Dagan listened to the webinar and shared her notes earlier this month. Her notes are copied below.

Robin


Notes by Denise Dagan, Brain Support Network Volunteer

Grit, Grace, and Resilience: The Story of Successful Caregiving (Webinar)
Host: Family Caregiver Alliance
August 30, 2017
Speaker: Sarah Dulaney, RN, MS, GCNS

What is Acceptance?
* Recognize something as true
* Agree to undertake a responsibility
* Endure something without protest or reaction
* Receive or take something willingly

Between stimulus & response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom. – Viktor Frankl.

This statement elicits images of many doors. We choose which one to go through.

Slide: diagram of parasympathetic nerves (“rest & digest” responses) and sympathetic nerves (“fight or flight” responses). Evolutionarily, this is how we have survived when confronted with a threat. But, the sympathetic system can be stimulated by things that are not a physical threat (like an attacker). If the body is perpetually in this high stress state, negative health outcomes are the result (high blood pressure, diabetes, metabolic syndrome, etc.). This is why we need to find ways to reduce stress as caregivers – to protect our health.

Six Ways Our Brains Help Us Survive
1. Interoception – internal signaling and perception of what our bodies need (hunger, thirst, pain)
2. Spatial orientation and navigation helps us fulfill our needs
3. Motivation and planning – using energy & focus to plan & initiate actions to meet our needs
4. Judgement and decision making – notice opportunity and distinguish danger (risk/reward)
5. Cognitive flexibility – ability to adjust actions to changing demands
6. Relational skills – ability to collaborate & coordinate with others

Those with dementia have the fight or flight response, but less ability to use these 6 skills to function in the world efficiently and effectively. They can’t accurately gauge a situation or make a good decisions about how to respond to stimuli

As caregivers, Acceptance of these limitations Enables our:
* Observation and adaptation
* Proactive planning and goal directed action
* Letting go (of those things you have no control over, and choosing how to respond to what you do have control over).

Observations – What to Look Out For (because someone with cognitive decline can’t do this for himself/herself)
* Sudden changes or signs of delirium
— Increased confusion, agitation, paranoia, hallucinations
— Not sleeping at all or sleeping all the time
— Hyperactivity or sluggishness
— Loss of ability to do things they can usually do

* Call the doctor!
– Rule out possible infection (urinary tract or respiratory)
– Other possible causes: constipation, dehydration, underlying medical issues

Other Things to Look Out For:
* Driving accidents or close calls
* Financial mistakes or exploitation
* Falls & other injuries
* Wandering & getting lost (even repeated incidents of, “Where did I park the car?”)
* Household accidents or close calls (burning food, eating spoiled food, trying to eat non-food items)
* Weight loss & dehydration (forgetting to eat and/or drink)
* Swallowing problems (choking, coughing, esp. when swallowing liquids)

Balancing Safety and Independence
Three tools that help:
* Adapt the environment to support function (move or remove furniture or throw rugs, add lighting and grab bars)
* Communicate with compassion, playfulness, and respect
* Create a predictable routine that includes meaningful activities
People with dementia don’t have skills to initiate activities on their own. They rely on caregivers to get them started. People with the apathy of Parkinson’s disease can be in the same boat and rely on caregivers to get them moving.

Tool #1
Helpful Environmental Strategies
* Reduce clutter
* Improve lighting to reduce shadows and glare (shadows can be perceived as a hole by those with dementia)
* Remove or cover mirrors (sometimes reflections are confusing or disturbing for people with dementia)
* Install adaptive equipment (grab bars, hand rails, transfer poles, ramp, stair lift)
* Remove or secure rugs (to prevent tripping, and may be perceived as a hole by those with dementia)
* Use color contrast to increase visibility and depth perception (esp. grab bars, utensils, plate, cup)
— Use solid colors, not prints, to keep the visual field uncluttered.
* Create a “Command Center” or a place, like the person’s favorite chair, where high-demand objects are nearby (cell phone, purse, water, snack, activity). Seeing these items can be calming, and prevent caregivers from fetching things constantly.
* Create “Workstations” or places where objects are organized by task (medications, meals, personal hygiene, dressing). Don’t keep non-toothpaste tubes near tooth brush, so they don’t grab the wrong tube to brush their teeth. Put items they don’t use independently in an inaccessible space. Maybe label the toothpaste tube with a cleaner label than what comes on the tube from the store.

Speaker presented before and after photos of cluttered spaces that have been cleaned up for visual clutter, tripping hazards, increased visual perception, etc.

Proper Chairs:
* Full length armrests (provide support to help push themselves out of a chair)
* Seat height that allows a person to sit with knees level to hips (about 18”)
* Seat depth 19-22 inches
* Comfortable but firm cushion
* Bright colors with bold contrast
* Room for feet underneath (a chair with legs, rather than upholstery right to the floor)
* Water resistant upholstery or waterproof seat pad

Environment Resources:
* Social Care Institute for Excellence, “The Dementia Environment at Home” 12-minute video:
youtube.com/watch?v=MRcd6xzUwKs
* This Caring Home, website from Cornell University with tips and advice for improving safety and function (falls, cooking accidents, wandering, toileting and bathing):

thiscaringhome.org/index.aspx
* Dementia Enabling Environments, website developed by Alzheimer’s Australia, with downloadable guides on how to optimize each room:
enablingenvironments.com.au/downloads.html

* Centers for Disease Control and Prevention (CDC) Fall Prevention resources for health care providers and patients:
cdc.gov/steadi/index.html

Tool #2
Compassionate Communication
* Give the person time to respond (their mental processing speed is slower than yours whether they have dementia or Parkinson’s disease)
* Listen
* Repeat yourself, if necessary – do not correct, scold, argue, or mock
* Remember they are doing the best they can
* Acknowledge their feelings
* Reassure them that things will be okay and you are in this together
* Remember your body language!
* Offer affection, if the person responds well to affection (hold their hand, rub their back, give them a hug)
* Incorporate pets and/or nature sounds to create a calm environment

Playfulness and Respect
* Laugh with the person – not at them
* Avoid ‘elderspeak’ or ‘baby talk’
* Use a matter-of-fact tone of voice
* When the person is distressed and needs help de-escalating
— Try to stay calm yourself
— Acknowledge their feelings
— Redirect the conversation – this takes practice!
— Refocus on the present moment (what are they wearing, what is the weather like, what else is going on in the room)
* Distract with another topic, a snack, music, or activity

Helpful Phrases…
* Can you help me _____ ?
* Will you just give it a try, please? (useful for getting them to a day program)
* It’s time to ____ .
* Would you like this one or that one? Just a choice of two, not more (with those who have dementia).
* It sounds like _____ . – or- It seems like _____ . (relating to their current state with empathy)
* I am sorry this is hard, we’ll get through this together.

Tool #3
Establish a Daily Routine
* Day programs are great for establishing a daily routine and giving caregivers time away from caregiving.
* Keep consistent sleep and wake times (nap no longer than 15-20 minutes around 2p or 3p)
* Have regular periods of active engagement
— Helping with chores (sweeping, folding, wiping the counter, sorting the mail, cooking)
— Arts & crafts, gardening, simple puzzles or games (Jenga, blackjack, matching games, iPad apps)
— Bathing and grooming rituals (getting your nails done or hair cut, even for men)
* Include passive engagement because they need to rest (both those with dementia and Parkinson’s)
— Listening to music or a story
— Watching TV or looking out the window
* Include exercise (walking, exercise video, Wii, dancing, etc.)

Healthy Coping Strategies for Caregivers:
1. Tune-in to yourself and others
2. Find balance
3. Try something new

S.T.O.P.
S – Stop
T – Take a deep breath (center yourself so you can be flexible and present for your loved one)
O – Observe what is going on in you (Are you stressed? What are your needs?)
P – Proceed

What Do Emotions Feel Like?
Anger, Fear, Sadness, Joy, Disgust, Surprise – Talk yourself out of fight of flight mode to handle calmly what you are presented with.

Find Balance
* Connect with other people (we are tribal. Connecting is in our genes and good for our brains.)
— Those who have social support through a crisis (of any kind) suffer less trauma from the experience.
* Notice pleasant events and share them (sharing positive events amplifies them for the sharer)
* Remember who and what you are grateful for

Dr. Bessel Van Der Kolk, “The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma.” Speaker is reading this and finding it important.

Try Something New, The Benefits:
* Interrupt negative thought patterns – Let go and move on
* Avoid boredom
* Help break bad habits
* Expand your world

Definitions
Grit:
* Courage and resolve; strength of character

Grace:
* The quality or state of being considerate or thoughtful
* A charming or attractive trait or character
* Ease and suppleness of movement or bearing

Resilience:
* An ability to recover from or adjust to misfortune or change

QUESTION AND ANSWER

Q. Sibling sisters where one is a control-freak and mom has dementia. How can she help the control freak and the primary caregiver?
A. It’s helpful for the caregiver to receive concrete offers rather than, “Call if you need anything,” or “Do you need anything?” Instead, “I can stay with Mom this weekend,” “I can bring dinner on Wed.,” etc. Especially offering a regularly scheduled meal, activity, chore, or errand can be very helpful. It is not helpful to make suggestions to the primary caregiver unsolicited, like “mom should drink coconut water, (or whatever),” but it is helpful to listen to the primary caregiver and let them vent their stress.

Q. What is your advice for someone who feels guilty that they could be doing more, be more present, etc.
A. Accept the things you cannot change. Caregiving is the most difficult thing you can do. Be gentle with yourself and that allows you to be kinder to the person you are caring for. Understand you will not always do everything perfectly. It is okay to set your own limits and say no where your limits are. Be engaged in every way you can manage, and accept that that is enough. Whatever you do with love is very important.

Q. Tell us more about the Care Ecosystem Study. What are the goals? What data is being generated?
A. Funded by Medicare and NIH. UCSF and Nebraska hosting the study. It is survey based data collection in the control group. The intervention group has a support team to help find resources, educate about dementia care, provide medication training, manage behaviors, advance care planning, long term care planning, etc. Publications out now about how they developed the intervention protocol, and more publications to come. Looking at quality of life for patient, hospitalization frequency and re-admittances, caregiver health, whether these interventions delay placement into long term care.

Q. Parents have dementia. One kid accepts, but other kid does not. What to do?
A. Perhaps you can have an MRI to see brain shrinkage, or neurological testing results to show sibling who doesn’t accept dementia. This can be helpful when a distant relative doesn’t see behavioral evidence of the diagnosis in brief interactions with he parent. Have the distant relative come to doctor appointments or stay overnight or over a weekend in the parent’s home to witness behavior and cognitive changes in the parents.

Q. Adult child had life planned, now parent(s) have dementia and plans are interrupted.
A. It can be very difficult when a parent is diagnosed with dementia and bring up feelings of resentment, especially if there is not a close relationship to the parent(s). Perhaps make arrangements through the parents’ doctor for others to manage their care or move them to a facility. Its okay not to accept being your parents’ full time caregiver if it is not for you financially, or personally.

Q. Thoughts on 1. A man charged with elder abuse for having sex with his demented wife, and 2. If a married person in a facility who doesn’t remember the marriage and wants to enter a new relationship in the facility where they live.
A. In general, people with dementia have the same feelings and need for love. In most facilities spouses and/or partners can have conjugal visits. The facility will manage on a case-by-case basis as their behavior impacts those around them. Someone with dementia may be able to have or continue an intimate relationship, especially with some assistance. They certainly have the capacity to choose whom they feel comfortable being intimate with.

“An Open Letter from a Caregiver to the Diseases, Illnesses and Afflictions that Shake Our Lives”

This blog post is titled “An Open Letter from a Caregiver to the Diseases, Illnesses and Afflictions that Shake Our Lives.” The author is Mark Stolow, the CEO of Huddol, which is an organization “committed to helping every caregiver along the journey.”

Robin


www.huddol.com/Huddoling/an-open-letter-from-a-caregiver-to-the-diseases-illnesses-and-afflictions-that-shake-our-lives-dear-unexpected-pain-in-my-ass-you-re-not-what-i-imagined-and-you-re-not-what-i-asked-for-you-8t9f0s1e

An Open Letter from a Caregiver to the Diseases, Illnesses and Afflictions that Shake Our Lives
Mark Stolow
Huddoling
September 20, 2017

Dear Unexpected Pain in My Ass,

You’re not what I imagined and you’re not what I asked for. You can expect me to feel angry, disappointed, and wrestle with self-pity. It’s easy to blame you. But I’m learning that you’re just a catalyst, and I am the cause – I move my emotions.

You’re here and I’m trying to get used to that, but don’t expect me to welcome you with open arms. You didn’t think you could stomp on the portrait of my perfect life and have me just stand by idle. I’m shaken and stirred, but I’m not down and out.

You force me to look at my loved one in a way that challenges my ideas about love and relationships. I never back down from a challenge and ideas can change.

You make me feel vulnerable, stripped down, and even defenceless. But I’ll dig deep and find another gear. The callus from your wounds will be my armour, but it will never make me callous. It will never harden me.

My friends don’t understand you, which means they hardly understand me anymore. But I’ve met some other people along the way, some people who know you well. They’ll help me move through your unpredictable and wily ways.

Physicians deplore you so much, they hardly notice me. I’m okay being in the silent minority, walking quietly but carrying a big, life supporting stick.

Your habit of poking your nose into my life, my work, my family, my solitude, into every space that I live and breathe, is exhausting. But you can’t deflate my will or wreak havoc on my resolve. I’m like a finely tuned All-in-One – scanning, printing, copying, and faxing my way to making sure you go on yours.

So to you, the disease, illness, affliction that shakes my life, I say: You may have made me, but you won’t break me.

Yours sincerely,
The Unsilenced Caregiving Minority

 

“An Advance Directive for My Mind” (letter to children)

The author of this blog post helps her stepfather care for her mother who has dementia. This blog post is a guide to the author’s children if the author develops dementia and ends up being cared for by her children.

An excerpt: “If the time comes when I’m no longer who I used to be, help me live my life, but also set boundaries for living your own. My life is almost over and yours isn’t, so save yourself. Take care of me only as long as you can take care of yourself too. Don’t try to do everything. Before the chaos overwhelms you, get as much help as you need, as quickly as you can.”

Here’s a link to the blog post on “Medium”:

medium.com/@rachelratliff/an-advance-directive-for-my-mind-a358ce80af7d

An Advance Directive for My Mind
by Rachel Ratliff
Medium
Nov 28, 2017

If you read the blog post online, you can also listen to the music suggested by the author.

Robin

 

“Grit, Grace, and Resilience: The Story of Successful Caregiving” Webinar, Aug 30

Family Caregiver Alliance is hosting a webinar for caregivers to those with dementia this Wednesday, August 30th, 11am to noon PT. Details are:

Grit, Grace, and Resilience:
The Story of Successful Caregiving

Caring for someone with dementia is a demanding and enduring challenge. It takes our best selves and all the support we can get from those in our communities. This webinar is a reflection on ways those who provide care can sustain their health and well-being throughout the caregiving journey.

Objectives:
* Learn why accepting the situation is important.
* Identify three tools to help balance safety and independence.
* Learn healthy coping strategies.

Speaker: Sarah Dulaney
Sarah Dulaney earned a Master of Science degree in gerontological nursing at UCSF and is certified as a Geriatric Clinical Nurse Specialist by the American Nurses Credentialing Center. For the past 14 years, Sarah has worked with adults with cognitive impairment in community, long term care and hospital settings.  The focus of Sarah’s work is on improving care delivery and support for patients with dementia and their caregivers in whatever setting they may live. She finds joy in “sharing the moment” with people with dementia.

When: Wednesday, August 30, 11 a.m. to 12 noon (PT)

Cost: No charge

Contact: Calvin Hu, [email protected], (415) 434-3388 ext. 313

Registration

“How to Inspire a Dementia Patient to Shower” (Bob DeMarco)

This blog post may be of interest to those struggling to get someone with dementia to shower.

Many in the Alzheimer’s community will know of Bob DeMarco, who cared for his mother with AD. This July 2017 article is from Bob’s website, The Alzheimer’s Reading Room. Of course the suggestions offered apply to all types of dementia, not just Alzheimer’s. The full text is copied below.

There’s also an 11-minute podcast, which is basically Bob reading this article. On the YouTube page of the podcast, Bob lists several resources that “deepen the content” of the podcast/article. I’ve copied below those additional resources.

Robin

—————

www.alzheimersreadingroom.com/2017/07/how-to-inspire-a-dementia-patient-to-shower.html

How to Inspire a Dementia Patient to Shower
The Alzheimer’s Reading Room
By Bob DeMarco
July 17, 2017

Getting an Alzheimer’s patient to shower can be difficult. In order to accomplish this mission you will need to learn how to be a guide, how to use bright light, and how to use positive reinforcement.

Thousands of caregivers and dementia professionals have used these techniques and they work.

My mother usually resisted when I asked her to take a shower – for years. When she occasionally said something other than NO, I looked to the heavens as if it was a reward.

It took me quite a long time to figure out what to do and how to properly motivate my mom so she would take the shower without resistance.

 

1. Constant positive reinforcement about the positive effects of being clean.

My mother would usually take her shower around 3 in the afternoon. I gave up trying to get her to take her show in the morning because she wouldn’t do it.

During the course of the day I would start setting the stage for the shower early in the morning and throughout the day.

An hour before her shower, I would take my shower and then come out with my head still wet and my face clean shaven and start extolling how great it felt to be clean.

I would get my mother to touch my face and show her how smooth it was. As she was touching my face I would say – smooth a few times.

Eventually she would say smooth, or “smooth as a baby’s butt”. This would give both of us a good laugh.

I would also get her to touch my wet hair. Then I would say – clean. I would say clean a few times as she touched it.

I would then tell her how great it felt to be clean. Positive reinforcement about the virtues of being all nice and clean.

Please Note – This was designed to fix the idea of a shower in her brain. All of this was designed to set the stage for Dotty’s shower that was coming soon.

I was trying to set a pattern leading up to the shower, and then a specific pattern when it came time to take the shower.

Establishing patterns is one of the only ways I discovered that worked when it came to establishing consistent behavior with someone living with Alzheimer’s disease.

I am convinced that trying to do the same thing, at the same time, every day is very helpful in Alzheimer’s caregiving.

 

2. Prior to the shower I tried to make sure my mother was sitting in bright light.

I would sit her next to a window – in the kitchen usually do the trick. I learned that bright light can be mood altering when used effectively with dementia patients.

Put it this way – bright light, bright mom.

Before shower time, I always talked to and engaged my mother. I would resist the temptation to sneak up on my mother and then announce – time to take a shower. This doesn’t work, and it never worked for me.

Singing can be a good way of engaging a dementia patient and getting their attention. I learned my mother was always willing to sing Shine on Harvest Moon.

It became even easier after we obtained our repeat parrot Harvey. Now the three of us could sing together. This usually delighted Dotty.

I understand that Alzheimer’s patients often say NO when asked to take a shower. Sometimes my mother would say, “I already took my shower”. This was amusing because she was still sitting in her pajamas.

Rule to live by: Never correct an Alzheimer’s patient if they say they already took their shower.

Rule to live by: Never try to explain to them the importance of taking a shower – like good hygiene.

Ever hear the saying “loose lips sink ships”? Explanations and lots of words will sink your caregiving effort every time.

 

3. When it comes time to take the shower think of yourself as a guide.

You are going to guide your loved one to the shower by taking their hand. Of course, you will already have given them a nice smile, and received a nice smile back before you start to take action.

The weapons in your caregiver arsenal: the smile, your hand, and the most important of them all – positive reinforcement.

Here is one simple way to get someone living with Alzheimer’s to take a shower in my opinion. I learned this as a freshman in college in Psychology 101. Let’s call this Pavlov’s dog and the shower.

How to use the zinger. The shower must always lead to something the dementia patient wants or enjoys. In the case of Pavlov’s dogs they rang a bell when the dogs would eat. Eventually, they would just ring the bell and the dogs would salivate. This is known as a conditioned response.

When I got mom up for the shower I wouldn’t say a word. I would stick my hand out and wait for her to take it. And away we would go.

When she asked where we were going I would hold her hand and walk her toward the bathroom.

At this point I fire in the zinger. After you take your shower mom you will get a nice snack.

I usually said potato chips because they were her favorites. Positive reinforcement before the shower, BIG positive enforcement after the shower. For many of you, ice cream or chocolate should do the trick.

Two points here. One, mom gets the positive reinforcement after every shower, the reward so to speak – the potato chips or ice cream.

Two, I am involved with mom all the way. I don’t say you need a shower and then wait for her to go take the shower. I assist her right up to the door of the shower.

You have to be actively involved with a person living Alzheimer’s in everything they do. Once you get the hang of being actively involved you will find and learn – that it gets easier to guide your loved one and get them to do what you would like them to do.

Resist the temptation to be a parent. You are dealing with an adult with dementia, not a child.

Resist the temptation to be the boss. Instead be a guide and lead with a smile and your hand, palm turned up. Offer your hand to your loved one.

Always think positive and endeavor to find new and better ways to introduce positive reinforcement into the equation.

If you want your loved one to take a shower every day establish a pattern. Make sure the communication and activity leading up to the shower are positive and that you are engaged with the patient before guiding them.

Extol the virtues of being clean and how wonderful it feels. Get all happy about it – show your enthusiasm.

Make sure the immediate aftermath of the shower is positive. Use potato chips, or ice cream, or a trip out the door (this really worked well for me).

Don’t worry about being so happy you can’t see straight. Once you get this technique down you will be so happy you won’t believe what it feels like.

Don’t worry, you can do it. Might take some practice and patience, but it will happen.

 

List of resources on the YouTube page for the 11-minute podcast:

www.youtube.com/watch?v=myAG_rGIli4&feature=youtu.be

The following articles deepen the content available in the Podcast.

5 Tips How to get an Alzheimer’s Patient to Shower – http://bit.ly/RIKk4Q

Dementia care meet meanness with kindness – http://bit.ly/2u3qt4y

How to Change Patterns of Behavior in Alzheimer’s and Dementia Patients – http://bit.ly/2cfoh56

The Importance of Bright Light in Dementia Care – http://bit.ly/aoYGZg

Should you correct someone with dementia – http://bit.ly/2u3qt4y

How the Smile is a Powerful Communication Tool in Dementia Care – http://bit.ly/2fOBP59

Alzheimer’s Care Be a Guide – http://bit.ly/2j5ej5v

The Best Way to Find Solutions to the Problems that Caregivers Face Each Day – http://bit.ly/alzheimers-answers

 

The need to distinguish between Alzheimer’s and other dementias

This is a long article in a recent LA Times about whether it’s important to distinguish between Alzheimer’s and other forms of dementia. Understandably, the focus is still on Alzheimer’s Disease.

Here are some excerpts:

* “Alzheimer’s disease is the most feared and most common form of dementia, accounting for between 60% and 80% of all dementia cases diagnosed. But at least seven other forms of dementia, and dementia linked to the movement disorder Parkinson’s disease, can cause loss of memory, reasoning, judgment and the ability to speak, comprehend and care for oneself.”

* “Doctors and insurers, including the federal government, which administers Medicare, are asking some variants of the same questions: If an effective test, which costs between $3,000 and $5,000 a shot, can diagnose dementia early, and distinguish Alzheimer’s from other forms of dementia, should it be recommended to patients with cognitive concerns and routinely covered by their insurance? Would it make patients’ lives better, or lower the cost of their care?”

* “At the Alzheimer’s Assn. International Conference in London last week, researchers reported their preliminary findings from a trial that is testing the impact of diagnostic testing for Alzheimer’s disease on nearly 19,000 Medicare beneficiaries … with a diagnosis of either ‘mild cognitive impairment’ or atypical dementia. The study … set out to find out whether knowing — getting the costly test that would offer either confirmation or reprieve — would change the way that patients with cognitive troubles are treated, or the way that they plan their lives. The preliminary results suggested it did. After getting the results of a PET brain scan to detect and measure amyloid deposits, which are the key hallmark of Alzheimer’s disease, roughly two-thirds of the subjects saw their medication regimens changed or were counseled differently by their doctors about what to expect. That new information may have guided family caregivers in planning their own futures, or prodded patients to make financial decisions and power-of-attorney assignments sooner. Some who learned that they did not have Alzheimer’s discontinued medications that can have unpleasant side effects. Others learned they do have Alzheimer’s and decided to enroll in clinical trials that will test new drugs.”

* “A second study presented in London analyzed data from several studies, and found that in a large population of research participants with cognitive concerns, brain amyloid PET scans led to a change in diagnosis in approximately 20% of cases.”

* “To the estimated 16 million Americans living with some form of cognitive impairment, telling the difference could make a significant difference. Dementia forms with different origins progress differently (or sometimes not at all). They respond best to different medications, and will come to require different levels of care and treatment. Some (though not Alzheimer’s) can even be reversed with treatment. Being able to distinguish which form of dementia a patient has should help doctors and caregivers to make better choices.”

Here’s a link to the full article:

www.latimes.com/science/sciencenow/la-sci-sn-alzheimers-transcranial-magnetic-stimulation-20170726-story.html

Science Now
Is it Alzheimer’s or another dementia form? Why doctors need to distinguish and how they might do so
by Melissa Healy
LA Times
July 27, 2017

Robin

 

“Caregiving Is Hard Enough. Isolation Can Make It Unbearable.”

This article from yesterday’s New York Times “New Old Age” Blog is about caregiver isolation. Here are key excerpts from the article:

* Like so many caregivers, [Ms. Sherman-Lewis] has discovered that along with the abandoned career, the hands-on tasks, the medical scheduling, the insurance tussles and the disrupted sleep, she faces another trial: social isolation.

* “Caregiving is done with a lot of love and affection, but there’s a lot of loss involved,” said Carey Wexler Sherman, a gerontologist at the University of Michigan Institute for Social Research. “People talk about friends disappearing, about even family members not wanting to be involved. It’s a lonely business.”

* Sometimes, caregivers isolate themselves.

* Yet a habit of avoiding others — or watching them avoid you — collides with a growing body of research showing how damaging isolation and loneliness can be. They are associated with a host of ills, including heart disease and stroke. Among older people, isolation is linked to depression, even higher mortality. Lonely old people, Dutch researchers have found, are more apt to develop dementia.

* “The support is what leads to less stress, less depression, better health and delayed nursing-home admissions,” Dr. Mittelman said. Interestingly, her team has found that “instrumental support,” in which others actually help with tasks, has less impact than emotional support. “Having someone outside who is paying attention and who cares is more important,” she said.

* “Don’t invite me for lunch — you know I can’t go,” Ms. Sherman-Lewis said. “Just bring a pizza and a bottle of wine and come by.”

The full article is worth reading:

www.nytimes.com/2017/08/04/health/caregiving-alzheimers-isolation.html

Health | The New Old Age
Caregiving Is Hard Enough. Isolation Can Make It Unbearable.
by Paula Span
The New York Times
Aug. 4, 2017

Robin