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“Caregiving With Siblings: Your Questions Answered” (Next Avenue)

This article will be of interest to adult children with siblings who are caring for aging parents.

Here are the highlights:

– Don’t expect equality. Find what each sibling can do and accept that it will not be equal.

– How to handle things when a sibling lives elsewhere. Make a direct ask and see what they can do.

– No one is a mind reader. Ask for the help you need.

– Know when to let it go. Disagreements are not worth causing a permanent rift in the family.

– When your sibling is out of touch. Initiate formalized, detailed communication with all siblings so everyone is in the know.

– Acknowledge each others’ strengths. Everyone can help in some way, even if it’s not the level of contribution you may want.

Here’s a link to the full article on Next Avenue:

Caregiving With Siblings: Your Questions Answered
How to handle conflict while caring for aging parents
Next Avenue
August 18, 2017
By Emily Gurnon


“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.



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:

The following articles deepen the content available in the Podcast.

5 Tips How to get an Alzheimer’s Patient to Shower –

Dementia care meet meanness with kindness –

How to Change Patterns of Behavior in Alzheimer’s and Dementia Patients –

The Importance of Bright Light in Dementia Care –

Should you correct someone with dementia –

How the Smile is a Powerful Communication Tool in Dementia Care –

Alzheimer’s Care Be a Guide –

The Best Way to Find Solutions to the Problems that Caregivers Face Each Day –


“Role Reversal: Taking Care of Older Loved Ones” – Webinar Notes

Earlier this week, Fidelity hosted a webinar on the role reversal adult children caregivers experience in caring for their parents. Though focused on adult children caregivers, I think the webinar has lots of useful content for all of us.

A Fidelity estate planning specialist and a psychiatrist addressed these five topics:

– Having a series of conversations to identify the needs and desires of elder(s) in order to create a plan (or roadmap) toward achieving those goals.

– Consulting a legal advisor to learn what documents should be in place to ensure those desires are met.

– Consulting a financial advisor so you can plan in advance for where the elder(s) can afford to live.

– Anticipating the elder’s needs and making modifications to the current situation or moving the elder to someplace affordable, appropriate to his/her needs, and hopefully someplace he/she approves.

– Take care of yourself. Consider the personal and financial impact if you choose to do hands-on care.

Brain Support Network volunteer Denise Dagan attended the webinar and shares her notes (below). Fortunately it wasn’t a sales pitch for Fidelity.



Notes by Denise

Role Reversal: Taking Care of Older Loved Ones
August 16, 2017
Webinar Hosted by Fidelity

Role Reversal = They were there for you and now you need to be there for them.

The impact on caregivers is stress that impacts health, happiness and their financial situation.


Preparing for Care

You can’t gauge how long someone will live based on their parents’ longevity.

Best to have a conversation early about their finances, how they would like to be cared for, and to put all the necessary documents in place with instructions for family to follow when a parent dies.

Trying to have those conversations in the midst of a crisis just makes it more difficult.

Don’t think getting the necessary information and documents in place is a ‘one-and-done’ thing.

Start talking about it during natural gatherings, like holidays. Keep having those conversations until you have everything in place you will need.

Fidelity’s Aging Well Guide – More detailed information than this 1-hour webinar.

Fidelity’s Health Event Checklist – Pretty cool because you can download it and fill it in on your computer to document which documents you have completed and their location, and a summary of your care plan.

Fidelity’s Making Conversations Easier Booklet helps break down the overwhelming nature of the tasks.

1. Getting Grounded – What do you want to get out of the initial conversation? Where are you going with these conversations? Even people who do social work or are lawyers feel overwhelmed.

2. Get set – Specific conversations, even involving grandchildren, because it is a teachable moment. Approach these conversations as a family or team effort. Don’t give up if there is disagreement. Divide the tasks or research and come back together with new information to see if everyone can agree or compromise.

3. Get started – Pick a natural place to have a conversation that has no distractions, especially if you can find neutral territory. Involve distant participants through Skype or Google Hangouts. Verbalize your hope to put any family divides behind you by coming together to help a needy family member as a team.

Four Steps to Prepare:
1- Identify signals – unpaid bills, messy household, etc. are red flags they need help.
2- Push for autopilot – auto bill pay, etc.
3- Include both parents
4- Be part of meetings – meet their financial advisor, lawyer, but also neighbors and friends.

Key Documents:
* Power of Attorney – designates someone to be your health care proxy and/or legal proxy.
* Health Care Proxy – who has authority to make health care decisions for you if you are unable.
* Living Will – instructions for the health care proxy
* Will or Revocable Living Trust – an elder law attorney will help you know which is best for you.
* Documents you sign in the hospital only apply to that procedure and do not follow you forward, even at the same hospital.

Do all of these in advance. During a crisis is too late!


Managing & Paying

As soon as you finish one stack of paperwork, there’s another added to the pile.

Someone is ready for discharge from the hospital, but the family is unprepared to handle their care.

Do you have enough money to pay for care?

Where should an aging person live? Most people want to stay in their own home.

What would family have to sacrifice or give up in order to enable someone to remain in their own home?

You can put in your living will where you prefer to live.

Home Features for Added Safety:
– No-step entry
– Single Floor living
– Extra-wide doorways and halls
– Accessible electrical outlets

Build the cost or retrofitting a house for seniors or disability into a long-term budget.

Recognize that if you want to leave a financial legacy, you may be unable to do so.

Long-term care insurance considerations:
– Who are you buying the policy for? Consider the health spouse.
– Where are they likely to get care? Where do they want to live? Who’s going to provide that care?
– How will you fund long-term care insurance premiums as well as living expenses of the preferred location?

Continuing Care Communities combine standard living units with assisted living, memory units, and/or skilled nursing on one campus. It is ideal for spouses with very different care needs. Have a lawyer and financial advisor go over the cost/benefit of one of these places.

What about having elders move in with you?
– Maintaining privacy, grab bars, help with activities of daily living, etc.
– Many family members take this on themselves to the detriment of their own health and financial situation.
– You may be eligible for tax breaks if they qualify as a dependent.
– Flexible spending account may work for you. Talk with a financial advisor. It is not the same as a Health Savings Account.
– Does the care recipient qualify for veterans benefits?

Be aware of the stress you are taking on when you take in a loved one, especially if you are doing hands-on care, yourself. If you feel the stress talk to the care recipient, your doctor, your family, your religious leader. Brainstorm ways to relieve the stress for both caregiver and care recipient.

If you see the signs that your aging loved one need assistance, like unpaid bills, messy homes, body odor, etc. AND you don’t already have a plan in place, it is time to begin addressing the most urgent need first. Carve out some time to talk about those priorities and how they would like to handle it. It might be a private or a family meeting. This is the time you need to have (or get) your documents in place, before their ability to participate slips even further.

Know what documents your family member has already done. Where are those documents, who helped prepare them? Go meet the people who have helped put those documents together. It would be best to create a letter of instruction and suggestions for your inheritors to know where everything is and what to do in what order after you die. Hand it to your inheritors to be opened after you die.

Build the plan proactively. Done in an emergency they are not well thought out and are usually more expensive.

Understand Medicare doesn’t pay for long-term care, and never pays for lodging except in skilled nursing. Often, this leaves the well spouse bankrupt because they did not financially plan in advance and understand what their expenses will be in their elder and unwell years.


Taking Care of Yourself

Having others you can rely on, talk to, help make decisions with are really helpful.

Find some time for yourself every day to feed your own needs (nutrition, exercise, sleep, relaxation).

If your own health declines, you cannot be available to care for someone else.

More and more millennials are taking care of elders which often means leaving full time work, passing up promotions, depleting 401K contributions.

Caregiver burnout is a real thing that damages your health, when demands overwhelm your resources with respect to your energy and time. Who is the likely person to take over for you, but sometimes they live far away. They can still help financially, or by taking the time to find you local resources. Be sure to include some reserves in your financial plan for someone to step in if/when the primary caregiver becomes unavailable.

Be sure to have your elder sign a HIPAA form so you can have access to their medical information when they become unable to explain their medical circumstances, personally.

Getting all these things in place are also teachable moments for the youngest generation in your family.

Use these conversations as a way to connect with your elder, share family stories, what they want their legacy to be, etc. It can really bring families together when they take this good side with all the hassle and frustration of arranging documents and putting a plan in place.


Wrapping Up

– Take time to listen
– Ask, don’t assume
– Lean into your own well being
– Know your resources

Think broadly about getting documents together, not just about the unwell person but their well dependents.

Build a roadmap to ensure there’s a plan in place. No plan is perfect, but it guides you when things come up.

Have the conversation to tell people what you’ve done and where to find things

Take stock of who’s “family”? Who might come to depend on you and who do you depend on?

Identify documents and gaps
Put a team together to fill those gaps
Put the emergency plan in place.

Fidelity has documents and resources they recommend to address both financial and long-term care plans.

Medications to Avoid or Use with Caution in Parkinson’s

The St. Louis APDA (American Parkinson Disease Association) Information & Referral Center, based at Washington University School of Medicine, recently published some wallet cards for medications to avoid or use with caution in those with Parkinson’s patients. Many of these same medications should be avoided or used with caution by those with Lewy body dementia and other atypical parkinsonism disorders.

As we aren’t sure how you can obtain these wallet cards, we thought we’d share the content here. It looks like these wallet cards were originally created by the Indiana Parkinson Center for Care.

The issues with some these medications are explained in four slides of this presentation by Johanna Hartlein, RN, clinical research coordinator/nurse practitioner, at Washington University: (see pages 50-53)


Here’s the content of the wallet card:

Medications NOT TO BE USED by PD patients:
* Haloperidol (Haldol)
* Chlorpromazine (Thorazine)
* Thioridazine (Mellaril)
* Molindone (Moban)
* Perphenazine (Trilafon)
* Perpenzatine
* Thiothixne (Navane)
* Flufenzaine (Prolixin)
* Risperdal (Risperidone)
* Zyprexa (Olanzapine)
* Geodon (Ziprasidone)
* Abilify (Aripiprazole)
* Promethazine/Phenergan
* Prochlorperazine (Compazine)
* Trimethobenzamind Hydrochloride (Tigan)
* Metoclopramide (Reglan)

Medications TO BE USED WITH CAUTION in PD patients:
* Benzodiazepines: These are medications sometimes used for anxiety and sleep like Alprazolam (Xanas), Lorazepam (Ativan), Chlordiazepoxide (Librium), or Clonazepam (Klonopin). At low doses, these are sometimes very successful at treatmingREM sleep behavior disorder (thrashing around in one’s sleep/acting out in one’s dreams); however, they must still be used with caution.
* Dextromethorphan (DXM): commonly found in many cough and cold medicines. Many patients use this without any problem but still should use caution.
* Benadryl (Diphenhydramine): commonly found in many cough and cold medicines. Many patients use this without any problem but still should use caution.
* Narcotics: These are medicines used for pain like Hydrocodone, Hydromorphine (Dilauded), Meperidine (Demerol), Oxycodone (Oxycontin).
* Muscle Relaxers: These are medicines commonly used for pain or for strained muscles and may include Lorcet or Lortab, Percocet, or Darvocet.

These medications can worsen cognition and balance, particularly in elderly PD patients or PD patients with pre-existing thinking problems.