Monthly Archives: December 2017

Advice for caregivers and those with Parkinson’s from Connie Carpenter Phinney

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Advice for caregivers and those with Parkinson’s from Connie Carpenter Phinney

The Parkinson Voice Project (parkinsonvoiceproject.org) has hosted a few webinars on various aspects of Parkinson’s Disease this year.  In November 2017, they held a 90-minute webinar with Connie Carpenter Phinney, former championship speed cycler and co-founder of the Davis Phinney Foundation.  The topic was the importance of building a productive care team.  Much of the webinar is applicable to non-Parkinson’s situations.  Though most of the ideas were focused on the person with a diagnosis, many aspects of the talk were applicable to caregivers.

You can find the recording here:

www.parkinsonvoiceproject.org/ShowContent.aspx?i=1844

For me, these were the highlights of Connie Carpenter Phinney’s talk that applied to both caregivers and care recipients:

* Stay social!  Lack of socialization is as bad for your health as smoking two packs of cigarettes daily.

* Get HIPAA release forms signed so family can communicate with all doctors.

* Designate your healthcare power-of-attorney to make decisions about your healthcare when you can’t.

* Set up your support team.  (This is true for caregivers and care recipients.)  You can start small — family, one friend you rely on, one doctor you trust, and one other person coping with the same diagnosis.  You will need more support than your family.  Put your friends to work whenever they offer.  Others coping with the same diagnosis understand your challenges and have information about resources, symptoms, tips, and tricks.

Here’s what Connie said about caregiving:

– You didn’t ask for it.  Neither did the person with Parkinson’s.
– You’re not alone, but it might feel like you are.
– You can do this, though you may feel like you can’t.
– It’s okay to dislike PD.  Avoid disliking the person with Parkinson’s.
– Teach your person with Parkinson’s to accept help from those other than their primary caregiver so that you won’t burn out.

And here’s Connie’s key advice to those with Parkinson’s:

– Avoid resentment.  It is negative and it will not serve you.
– Mind your manners.  Apologize if/when you lose your temper.
– Give praise.  Thank your caregivers.
– Accept help when you have Parkinson’s.
– Reward with smiles.  Smiling is good practice and good medicine.
– Move.  Get outside.  Exercise keeps you moving when you have Parkinson’s.  Sunlight helps you sleep.

As is customary(!), Brain Support Network volunteer Denise Dagan listened to the entire webinar and shared her notes.  See below.

Robin
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Notes from Denise Dagan, Brain Support Network Volunteer

Strategies for Building Your Care Team to Live Well with Parkinson’s
Speaker:  Connie Carpenter Phinney
Webinar Host:  Parkinson Voice Project
November 11, 2017

As you age you start living more in the present and the past, and not in the future.  Without a goal there is no future.  With Parkinson’s you don’t know what the future holds so you become content with the present.

Connie grew up in a home with her mom having chronic MS, three rambunctious sons and Connie as her only daughter.  Connie and her husband, Davis, who has Parkinson’s disease, learned a lot from caring for Connie’s mother and Connie’s Olympic training, that they apply to their Parkinson’s journey.
– Be flexible. Take things as they come.
– Live in the moment.
– Focus on you and continue trying to improve.

Who carries you, as the caregiver?  Who’s looking after you?  Are you looking after yourself?  In this journey you need to learn to ask for help.

The thing(s) about caregiving.
– It is not called caretaking.  It is not just one person giving and the other taking.
– Caregiving is a journey on a two way street.  It’s a long journey.
– It’s fair to ask, who cares for me?  It may take some work to figure out who cares for you.  Your person with Parkinson’s needs to care for their caregiver or make sure their caregiver takes care of themselves.
– Doctors as caregivers.  What?!  Connie never thought of the physicians in the equation as being caregivers, but it is a team.  Think about who’s on the team.  You want your primary doctor to view themselves as a caregiver and as part of the team.
– One caregiver told Connie that being a caregiver was the toughest job he had ever done and he had been a Navy Seal.
– According to a government survey, 60 million Americans consider themselves to be caregivers.
– We ALL care.  It is not a one-way street.  Connie prefers to see herself as a care partner.  She gives care but also expects care.

Harness your caregiving superpower.  Get out.  Do what you love.  Reduce stress.  Most caregivers identify to some degree with having some angel wings and a halo (occasionally tarnished).  Parkinson’s asks caregivers to slow down and be more forgiving, magnanimous, patient.

What I know:
– You didn’t ask for it.  Neither did the person with Parkinson’s.
– You’re not alone, but it might feel like it.
– You can do this, though you may feel like you can’t.
– It’s okay to dislike PD, avoid disliking the person with Parkinson’s.

What we know about Parkinson’s Disease.  It’s not just neuroscience.
– It can turn your world upside down.
– It’s 24/7.  A friend of Connie’s with PD doesn’t like to blame every outburst on PD, but it pervades every moment.  Connie gave him permission to, “pull the Parkinson’s card,” because PD is an unpredictable 24/7 thing.  He needs to apologize and do his best to keep it together, but he should cut himself a break.
– PD involves daily concessions most people don’t have to make.  Slip on -vs- tie shoes.  Button down shirts take a lot longer.  Having to allow much more time for things, or always running late.
– It rarely ‘plays nice.’  Just when you need to be somewhere you have symptoms that get in the way of your attending or making it to the event on time.
– It’s as unpredictable as it is complicated.  There are similarities between people w/PD, but many differences, too.
– Tremor is the tip of the iceberg.  People outside the Parkinson’s community don’t understand that non-motor symptoms are part of the equation (constipation, incontinence, pain, vision problems, sleep issues, etc.)  Even facial masking and the social consequences.  People think you’re not paying attention, stupid, or drunk.

Notes for the person with Parkinson’s:
– Avoid resentment.  It is negative and it will not serve you.
– Mind your manners.  Apologize if/when you lose your temper.
– Give praise.  Thank your caregivers.
– Accept help when you have Parkinson’s.  Teach your person with Parkinson’s to accept help from those other than their primary caregiver, to prevent that care partner from burning out and compromising their health.
– Reward with smiles.  Smiling is good practice and good medicine.  It moves your facial muscles!
– Move.  Get outside.  Exercise keeps you moving when you have Parkinson’s.  Sunlight helps you sleep.

Notes for the Parkinson’s caregiver:
– Patience.  Infinite patience.
– Re-Set.  (You might need a do-over to re-set the rules of engagement.)  The way you have interacted before in your relationship may no longer work now that Parkinson’s is a factor.  You may not be communicating well together since Parkinson’s entered the picture and you need to find a better way to work together.  Try to get to a place where you don’t have to apologize, but you do anyway.
– Choose to keep it positive and upbeat.
– Stay social.  Lack of socialization is as bad for your health as smoking 2 packs of cigarettes daily.
– Reminisce.  Looking back can help you look forward.  It’s good for your brain.
– Move.  Exercise.  Do what you enjoy that is active/physical.
– Be spontaneous and selfish once in awhile.  Connie took the opportunity to go see the total eclipse with her son at the last minute.  She found it so spectacular she vowed to take Davis with her next time.

The Rulebook (aka Game Changers):
1. Reboot, restart, rewrite your rule book.  Write it down and have a conversation with your partner about what’s working and what’s not for each of you.

2. Never let your person with Parkinson’s go to the doctor by themselves.  They aren’t very good advocates for themselves.  Even if you send them with a list they they don’t report back all the details.

3. Tape record the appointment because you each remember different comments the doctor made.  Taking notes distracts you.  Take notes from the recording so you have the important information handy.

4. Get to know your medical providers (neurologist/movement disorder specialist).  Connie recommends finding a movement disorder specialist and explained you really want a neurologist who specializes in movement disorders, even if it is only a once-in-awhile appointment to confer with your regular neurologist.  Your primary care physician (PCP) should be communicating with your neurologist/movement disorder specialist so your PCP is up to date on all the symptoms and treatments you have brought to the neurologist/movement disorder specialist.  You may have to insist that your PCP receive neurologist’s notes.  Once, when Davis’s regular movement disorder specialist was out of town and they had to see a different doctor, they gained a new perspective.  The new doctor gave them seven areas on which they could improve upon after 17 years with the disease and all their education about the disease.  They did a cognitive evaluation so they would have a baseline for Davis’s degree of dementia.  Much of the cognitive issues in Parkinson’s have more to do with the slowing of processing speed, which is what they found with Davis, but now they have the baseline to compare to over time.

5. Don’t be afraid to challenge and change.  Challenge what you’ve been doing.  You don’t get better by doing the same thing.  You can only improve by challenging yourself.  If you cycle, add some weight training, voice training, etc. to keep up with the pace of the degeneration of Parkinson’s.  You can get function back, but you have to really work at it.

6. Inform yourself about side effects of medicines vs. symptoms of disease.  Understand the side effects of medicines and how they affect behaviors vs. behaviors affiliated with the disease.  The caregiver needs to understand what to look for as far as aberrant behaviors.  Some people take up gambling, for example.  That can be a side effect of medications so telling your doctor and adjusting dosages or prescriptions will solve the problem.  Feel comfortable communicating with your Drs.

7. Safety first.  There is balance between minimizing the chance of falling vs. getting enough movement to keep moving.  Pain killers/opiods to treat an injury from falling can result in even more injury from falling due to dizziness.
Some things you need to draw a line in the sand and say, “No more,” like ladders, shower curbs, etc.
Install grab bars, ramps, etc. before you need them.

Rulebook Essentials:
1. Driving – No attendees had been tested to see if they are still okay to be driving, but several admitted feeling uncomfortable being a passenger while their family member with Parkinson’s.  Occupational therapy evaluation will test you to see if you are okay to be driving.  It is part cognitive, part reflex/skills based.  It is not cheap but it is less expensive than it can be if your person with Parkinson’s has an accident and the person they hit finds out they have Parkinson’s and are not fit to drive.  If you are okay to drive, you need to keep driving because lack of practice means losing skill week over week.

2. Disabled parking pass.  Not to be close to the store, but to have more door swing to get in/out of the car.

3. Sleeping arrangements.  REM Sleep Behavior Disorder (RBD) is when someone acts out their dreams.  It is very disruptive and can be injurious to a co-sleeper.  Best to have twin beds in the same room if you sleep with someone who has RBD.

4. Household safety.  The person with Parkinson’s should help around the house as much as possible.  Mobility and manual dexterity, cognitive skills.  If you don’t use it, you lose it – BUT – no ladders, cleaning gutters, and other activities dangerous to someone with gait/balance issues.

5. Understand the benefits, timing and side effects of medicines, especially if you change dosing.  Taking meds on time is incredibly important.  Be sure it is happening if symptoms are fluctuating, even if they set an alarm on their phone, because they could be forgetting what the alarm is for or sleep/snooze the alarm, then forget about it.  You could end up with too high a dose complaining about symptoms that could be due to inconsistent medication use.
Also be sure to order/refill meds prior to running out to reduce stress/hassle.

Don’t wait!!!
– Learn to ask for help.  Groceries, sweep the floor or walkway, any little thing is helpful.
– Learn to accept help.  Most of the people the Phinneys find helpful now, didn’t know them before PD.
– Teach your person with Parkinson’s to accept help early on so later they are willing to accept help.
– Don’t wait until you feel exhausted.

For all y’all:
– Be informed.  Don’t overrule your doctor, but understand why they are recommending x, y, or z.
– Avoid isolation.  Embrace the Parkinson’s community.  They will serve you well.
– Choose optimism.  It is your best friend during difficult days.
– Seek contentment.  Be satisfied with what you’ve got.  Stay off social media that looks like others are happier than you are.
– Humor heals.  It is distracting from your personal challenges.  Turn off the news.
– Keep the faith.  Whatever helps carry you from day-to-day.  Focus on happy.

Disability
It is important to consider when and how to apply for Social Security Disability.  If you are under 60 applying for Social Security Disability will fast track you onto Medicare.  Your first attempt at the paperwork will probably be rejected.  They usually come back and require more information.  Be persistent.

Dream Team
– Family First but you will need more
– Friends, especially those you meet after Parkinson’s diagnosis.  Old friends may be caught in old patterns and not know how to adapt and be helpful and supportive.  Don’t blame them for that, just seek new, supportive friends.
– Other people with Parkinson’s in their family.  They understand your challenges.  They have information, tips and tricks to share.
– Therapists – Physical, Occupational, Emotional therapists.  Connie recommends physical therapy regularly, especially with someone familiar with Parkinson’s.
– Physician(s) – PCP informed by your neurologist/movement disorder specialist.  Be sure the person with Parkinson’s signs a HIPAA release form so their family can communicate with all the doctors from the beginning.  You will also need to designate your healthcare Power-of-Attorney who can make decisions about your healthcare when you are unable to.

Start Small
– One friend you can rely on
– One doctor you trust
– Another person with Parkinson’s

Keep a Calendar
– Weekly classes
– Appointments
– Reminders for birthdays, weddings, trips, educational seminars
– Do what you love!  Connie paints, cycles, etc.

QUESTION AND ANSWER

Q. Does Davis still bike?
A. Yes. He uses an electric assisted bike to keep up with friends and family.  They also walk and Davis has joined a singing group.

Q. What are the 7 things the substitute neurologist recommended?
A. Take the driving evaluation, look at seeing an ENT about having collagen injections in the throat (they did have some success with this), botox for dystonia in one foot, medication changes, cognitive testing, weight training because Davis tends to falls backward but strength training may help that.
A. The Parkinson Voice Project doctor fully endorses getting different perspective in any area of life.

Q. How to go about seeing another doctor without making your regular doctor angry?
A. Explain to them you are trying to build a team and want them to communicate together.  Most doctors know people shop around, especially when they have a serious, long term illness.  May work best to have similar, but not the same specialties like neurologist & movement disorder specialist.

Q. How do you deal with Medicare says you can only have PT or other therapies for a limited time?
A. Every insurance company is like that.  Your doctor needs to continually support you and repeatedly prescribe it.  Try to find a physical therapist who knows about Parkinson’s and can be of the most help to you.
A. There is a Medicare Therapy Cap.  Parkinson Voice Project has raised $1M grant for physical therapy centers around the country to support expanding voice therapy for Parkinsons.

Q. How does Connie encourage Davis to do his PT without starting an argument?  Do you nag, or not?
A. In general that is where another person with Parkinson’s comes in handy.  When you sign up for something like Rock Steady Boxing with a group or friends, they can hold you accountable.  For typical PT like taking large steps, it helps to do it with them and try to make it fun and funny.  The exercise that works is the one that you’ll do!  Mix things up a bit so it is fun and not boring.  Until you meet someone who can no longer communicate, you don’t appreciate how important it is to keep working on speech.  Same with getting out of a chair.  Nagging never works.

Q. If you have a neurologist do they have a movement disorder specialist in their office for a consult?
A. No.  Usually, movement disorder specialists are in a group or specialty clinic.  Your neurologist may not recommend a movement disorder specialist, especially if you live in a rural area.
A. The speech therapist makes the analogy that her license allows her to treat a child, but she has 20 years experience with Parkinson’s, so she shouldn’t be treating children – but her license allows it.  Asking someone with Parkinson’s who they see can help you find the specialists you need.

“Dementia with Lewy bodies and Parkinson’s disease-dementia: current concepts, controversies”

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“Dementia with Lewy bodies and Parkinson’s disease-dementia: current concepts, controversies”

Kurt Jellinger, MD, is a well-respected neuroscientist in Austria.  He recently published an overview of the latest thinking in dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD).  Here’s a link to the abstract:

Dementia with Lewy bodies and Parkinson’s disease-dementia: current concepts and controversies
Kurt A. Jellinger
Journal of Neural Transmission (Vienna)
First Online: 08 December 2017

This is the key (long) sentence in the abstract:

DLB and PDD sharing genetic, neurochemical, and morphologic factors are likely to represent two subtypes of an α-synuclein-associated disease spectrum (Lewy body diseases), beginning with incidental Lewy body disease—PD-nondemented—PDD—DLB (no parkinsonism)—DLB with Alzheimer’s disease (DLB-AD) at the most severe end, although DLB does not begin with PD/PDD and does not always progress to DLB-AD, while others consider them as the same disease.

 

This is a very thorough review article that compares and contrasts DLB and PDD, looking at clinical features, diagnostic criteria, epidemiology, genetics, diagnostic biomarkers, fluid biomarkers, neuropathology, and management.

I’ve copied the full abstract below.  You’ll have to shell out some money to buy the full article, if you’d like to read more.

Robin

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Here’s the full abstract:

Dementia with Lewy bodies and Parkinson’s disease-dementia: current concepts and controversies
Kurt A. Jellinger
Journal of Neural Transmission (Vienna)
First Online: 08 December 2017

Abstract
Dementia with Lewy bodies (DLB) and Parkinson’s disease-dementia (PDD), although sharing many clinical, neurochemical and morphological features, according to DSM-5, are two entities of major neurocognitive disorders with Lewy bodies of unknown etiology. Despite considerable clinical overlap, their diagnosis is based on an arbitrary distinction between the time of onset of motor and cognitive symptoms: dementia often preceding parkinsonism in DLB and onset of cognitive impairment after onset of motor symptoms in PDD. Both are characterized morphologically by widespread cortical and subcortical α-synuclein/Lewy body plus β-amyloid and tau pathologies. Based on recent publications, including the fourth consensus report of the DLB Consortium, a critical overview is given. The clinical features of DLB and PDD include cognitive impairment, parkinsonism, visual hallucinations, and fluctuating attention. Intravitam PET and post-mortem studies revealed more pronounced cortical atrophy, elevated cortical and limbic Lewy pathologies (with APOE ε4), apart from higher prevalence of Alzheimer pathology in DLB than PDD. These changes may account for earlier onset and greater severity of cognitive defects in DLB, while multitracer PET studies showed no differences in cholinergic and dopaminergic deficits. DLB and PDD sharing genetic, neurochemical, and morphologic factors are likely to represent two subtypes of an α-synuclein-associated disease spectrum (Lewy body diseases), beginning with incidental Lewy body disease—PD-nondemented—PDD—DLB (no parkinsonism)—DLB with Alzheimer’s disease (DLB-AD) at the most severe end, although DLB does not begin with PD/PDD and does not always progress to DLB-AD, while others consider them as the same disease. Both DLB and PDD show heterogeneous pathology and neurochemistry, suggesting that they share important common underlying molecular pathogenesis with AD and other proteinopathies. Cognitive impairment is not only induced by α-synuclein-caused neurodegeneration but by multiple regional pathological scores. Recent animal models and human post-mortem studies have provided important insights into the pathophysiology of DLB/PDD showing some differences, e.g., different spreading patterns of α-synuclein pathology, but the basic pathogenic mechanisms leading to the heterogeneity between both disorders deserve further elucidation. In view of the controversies about the nosology and pathogenesis of both syndromes, there remains a pressing need to differentiate them more clearly and to understand the processes leading these synucleinopathies to cause one disorder or the other. Clinical management of both disorders includes cholinesterase inhibitors, other pharmacologic and nonpharmacologic strategies, but these have only a mild symptomatic effect. Currently, no disease-modifying therapies are available.

“Cognitive Impairment in Multi-System Atrophy: Is It Time to Update Diagnostic Criteria?”

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“Cognitive Impairment in Multi-System Atrophy: Is It Time to Update Diagnostic Criteria?”

This is a good summary article from Neurology Advisor (neurologyadvisor.com) in mid-November 2017 about cognitive impairment in multiple system atrophy (MSA).  Here’s a link to the full article:

www.neurologyadvisor.com/movement-disorders/multiple-system-atrophy-cognitive-impairment-diagnosis/article/707494/

This was the most interesting excerpt to me:

A 2014 position paper published in Movement Disorders by the MODIMSA Study Group observed that the shorter survival associated with MSA may mask a potentially higher rate of cognitive decline, as the incidence of CI in patients who live longer than 8 years is nearly 50%. “If the disease did not have such a rapid course, the cumulative prevalence of dementia in MSA would be similar to that of Parkinson disease,” they wrote.

The full article is worth reading!

Robin

Messages “From Beyond the Grave Are Changing How We Grieve”

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Here’s an excerpt from a recent article on Vice:

“In 2014, Talbert was diagnosed with progressive supranuclear palsy, or PSP, a rare and fast-acting neurodegenerative disease… She soon began making preparations. She knew she wanted to leave her children and grandchildren recordings of her voice — when Talbert’s father died nearly 40 years ago, that was the thing she forgot first. … She found SafeBeyond about a year after being diagnosed. It’s one of a growing number of services, including DeadSocial and GoneNotGone, that allow people to posthumously send video, audio, and text-based messages to their loved ones at planned times.”

The article notes that many find such messages comforting while others feel like such messages are “an ambush.” (Note that the “DMs” in the title refers to “direct messages.”)

Here’s a link to the full article:

motherboard.vice.com/en_us/article/qv3qv3/beyond-the-grave-text-messaging-changing-how-we-grieve-death

Away Messages
DMs From Beyond the Grave Are Changing How We Grieve
by Michael Waters
Nov 28 2017, 7:00am

Robin

 

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

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“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.