Book Review: A View from Within: Living with Early Onset Alzheimer's

A Review of "A View From Within: Living with Early Onset Alzheimer's"

Title: A View from Within: Living with Early Onset Alzheimer's

Author: Dr. Thaddeus M. Raushi, Ph.D.

Publisher: Northeastern New York Chapter of the Alzheimer's and Related Disorder's Association, Inc. 2001

What is it like to have probable Alzheimer's Disease? Not just what are the signs, but what is it like? How does it feel? When he wrote this powerful book, Dr. Thaddeus Raushi was in the early stages of probable Alzheimer's at age 57 (which is young for AD), as well as someone with Waldenstrom's macroglobulinemia (an incurable lymphoma cancer) since age 55. Until retiring because of his condition, Dr. Rausi was a college counselor. After retiring and at the time of writing this book, he continued to coordinate regional cancer support groups and served as a volunteer with the Alzheimer's Association.

Who will benefit from this book?  First, persons who are experiencing dementia, especially those experiencing Young Onset/Early Onset, may feel validated when reading Dr. Raushi's experiences.  Care Partners of all types will also benefit by gaining insight into what AD is like for one person.  These insights could foster understanding of a disease that is so hard to appreciate from the outside.

A View From Within is heartfelt and well-written. I imagined as though I was next to Dr. Raushi having a dialogue with him. He would share a concept or example, I would think of a follow up question, and he would answer it in the next sentence or paragraph. This made the book very easy to read.

Some of the most meaningful topics to me include:

• Blessing of being diagnosed while he could still plan his life and care wishes
• What conversations with others are like and the exhaustion after trying to keep up
• What not to say when someone says they memory challenges
• The difference of forgetting keys-like everyone does-versus probable AD
• The unfortunate "Labeling" of AD and moving from "person to patient" ( p 62-63 )
• The need to grieve losses in order to deal with them appropriately, rather than to deny them
• Why he does not pray to have the disease removed

There are many more insights I could share, but the best person to do this is Dr. Raushi in his own words.

At the moment, this book is out of print and according to staff at the Northeastern New York Chapter of the Alzheimer's Association, there may be a few copies around the office. It is my intention to connect with the Chapter and encourage them to republish it in Kindle and other media. The book is worth finding used on Amazon.  If I learn of more copies and any interest in a Kindle version, I will update you.  I hope you will sign up for updates to the blog for the new developments.

Special thanks to Dr. Kathleen Rusnak, Ph.D. who brought it to my attention as I listened to the CD audiobook of her lecture "Before They Forget: Maximizing the Spiritual Possibilities of Alzheimer's" (2005 The Brick Wall 2, Inc.).

Take Action:

• Tell me what you think of this review - leave a comment
• Get the book and read it or share with someone who may appreciate it.
• Share, Like, and +1 this article.
• Like us on FB and visit our website for a list of local classes, discussions, and services.

In Peace,

Matt 

Matt Estrade, MBA, CAPS is the Founder and Chief Mentor at Care Partner Mentoring, LLC in Covington/New Orleans, LA, USA. A more extensive biography can be found here.

Why I am Here: The Social Model of Dementia Care

I prefer to keep my articles focused away from me and to place a spotlight on persons living with dementia (PLwD) and their care partners.  At the same time, I think a self-indulgent post may be in order to tell the reader why I have dedicated my life to helping others find "Peace with Dementia" as I like to call it. This is more of an opinion article; while the sample interventions are based in science, I will cite very few sources.

If you visit my website, you will see a dedication to my Grandfather Milton Ragas who had some type of dementia in his last years and my Mom, Yvonne who advocated for him and coordinated his care.

While this was a catalyst for my calling, it does not explain my philosophy of Peace with Dementia.

I started my graduate studies in Gerontology under the direction of Christopher Johnson, PhD who enlightened me to the social model of dementia care.  Dr. Johnson is doing amazing things in a new dementia program at Texas State University. In short, the social model focuses on the person with dementia as a whole person, still capable of joy, fear, pain, delight, and other feelings.  The social model does not contradict, but does differ from the biomedical model of dementia care that focuses on medical treatment and drugs.  Ideally, the two models work together, caring for the body (biomedical) and the mind and spirit (social).  The current system is built upon a biomedical model, leaving a need for some balance and an enormous potential for increased healing through the social model.

Examples of the social model, like non-pharmacological interventions, take time, effort, patience, and empathy.  Examples of these interventions are:

• Studying a person's life history and personality to discover meaningful activities to delight the PLwD;
• Understanding that "problem behaviors" are typically the PLwD communicating a need, not trying to annoy his care partners;
• Discovering the root cause of these behaviors, which could be physical (untreated pain or discomfort) or emotional (fear and confusion where their parents are; a veteran dealing with combat trauma); 
• Using personalized music (Gerdner) to sooth patients who are agitated or combative;
• Utilizing meaningful activities to engage PLwD who are an elopement risk (wandering risk);
• Utilizing Validation Therapy (Feil) with much older PLwD trying to resolve a traumatic past;
• Care partner support groups and groups for persons with early onset dementia;
• and more...

While the above sample do not include pharmaceuticals, they do not necessarily exclude responsible use of drugs. What they always do include is what I mentioned above:  time, effort, patience, and empathy.

The social model fascinates me and it is my calling to educate and collaborate with all care partners who are willing to make the effort: family, friends, professionals, and staff.  In this journey, I appreciate and give credit to those researchers who came before me to discover these methods and credit to practitioners and family members who use these interventions everyday, even though it means more effort. They "get it." I am very blessed to be able to email back and forth with some of these leading researchers and teachers.

The social model means some potential frustration and much trial & error for care partners. It means learning from each person with dementia, the expert.  When one method does not work, we try another. Time, effort, patience, and empathy. The upshot is that when care partners are successful in these methods, the satisfaction and accomplishment is incredible.  Another benefit is saving time.  If you can use non-drug methods to sooth a combative PLwD, you are looking at lower risk of injury (which is amazing alone), as well as not having to document an incident. Stated another way, you are going to spend time somewhere and it may as well be in prevention of combative behaviors rather than the aftermath.

With Care Partner Mentoring, LLC,  I see my mission as four-fold:

1. Listening to the care partner; 
2. Educating & training with the care partner; 
3. Persuading the care partner to take action;
4. Encouraging the care partner when times are tough.

Persons with Dementia are whole persons, not a 'shell of a person' as we are conditioned to believe.  They were care-free children once, most raised families, many founded businesses and served others, and were community leaders. They deserve our love and attention.  As a care partner, you will have good days and bad days like they do.  Perhaps if you end up in the same position, someone will care for you this way.  If you agree with my perspective, we are on the same team and I hope you stay connected with me.  If you do not share my perspective, I hope you read more to consider these ideas.  

We need a very large team.

Thank you for reading my story and hope you will subscribe for updates and like my FB page for other updates.

In Peace,
Matt

Action Items:

• Add a comment or question.  Do you "get it" ?
• Share, Like, and +1 this article.
• Like us on FB and visit our website for a list of local classes, discussions, and services.

Matt Estrade, MA, MBA,  is Gerontologist and Founder/Chief Mentor at Care Partner Mentoring, LLC in Covington/New Orleans, LA, USA. A more extensive biography can be found here.






  

Fluctuating Awareness in Dementia and Why It Matters to Care Partners

Persons Living with dementia (PLwD), with their fluctuating memory, can confuse and frustrate even the most patient care partner. One day their loved one with dementia correctly recognizes them as their daughter. Days (or even moments) later, they think their daughter is their (now 86 year old) sister, or deceased mother. It can be heart breaking as when my grandfather did not recognize my mother Yvonne when he had dementia in the late 1990’s. Some days he knew her and other days did not. I can only imagine how frustrating this was for my Mom.  

If we as care partners experience this roller coaster, it can be easy to think that our loved one with dementia is doing it on purpose or can snap out of it if we just correct them.

In the April/March 2000 issue of the American Journal of Alzheimer's Disease, my mentor Dr. Chris Johnson and his wife Dr. Roxann Johnson published an important way of looking at why persons with a dementia do this. In their article “Alzheimer's Disease as a Trip Back in Time, ” Drs. Johnson and Johnson discuss that a person with dementia can turn back the clock in their mind, with their state of memory regressing to that of their 60’s, 50’s, 40’s and so on until in their mind they are children.  What makes the Johnsons' model unique is that the regression of memory is not a straight line moving backwards in time only, but contains loops to mean your loved one with dementia can travel back and forth in time.  

As mentioned in their paper, Drs. Johnson and Johnson are building upon the previous work of Paiget, Thornbury, Reisberg, and Kuhn.

Why is this model or perspective matter? 

• It is significant because if care partners understand that their loved one is on a trip back in time, they may better be able to join them on their journey.  It is not realistic or practical to try and get them to leave their journey and meet you. This correcting can bring about increased frustration, agitation, and further confusion. Their brain is impacted in a way that not even our best lecturing will overcome. Perhaps correcting makes us feel better because we do not know what else to do.

• The model also can help care partners understand that there can be variations in their loved one's perspective of time. Perhaps, this understanding can lead to more flexibility on part of the care partner and remind them that the "only constant is change."

• As stated in the article, this model may "caution against overestimating or underestimating the capabilities" of PLwD. It's very easy to assume that they can do something correctly because they did it correctly yesterday. This assuming may now be overestimating their abilities today. The same can be said if we assume that the PLwD cannot do something today because yesterday they could not. While it's difficult to truly understand unless you are a care partner, it is probably easy for the reader to sense that the constant changing of abilities and unpredictability can be frustrating.

So how do you join them on their journey when they are not in the present day? 

Here are a few quick tips to get you started. Look for more details posts in the future.

• Avoid contradicting or correcting them.
• Find ways to validate the PLwD and set them up for succeeding in what they do.
• Ask open-ended questions about the topic that they are talking about - let them do most of the talking.
• Jot down their phrases and track their time travel over a week or more. When you are not frustrated, review and think about ways you could have respond so you are prepared for next time.
• Be ready for some tough requests or questions, such as “Where is my mother?” when she died 20 years ago or “I want to go home,” when they are home. In short, your loved one is expressing a need to feel the security of a parent like they did when they were young.  A good first effort is to get them to talk about their mother or home (whichever home they mean).

Action Items:

• Read the abbreviated article here with the author's permission.
• Read the full article here with the author's permission.
• See Dr. Chris Johnson's profile here.
• Add a comment or question. 
• Share, Like, and +1 this article.
• Like us on FB and visit our website for a list of support groups and services.Matt 

Matt Estrade, MA, MBA is the Founder and Chief Mentor at Care Partner Mentoring, LLC in Covington/New Orleans, LA, USA. A more extensive biography can be found here.

Delighting Persons with Dementia with TimeSlips Storytelling

If there was an activity that you could offer your loved one or offer a client with dementia that would bring them delight and potentially improve their mood, would you do it?  

I am glad you said “Yes!” because there is such an activity if you are ready to learn the process, prepare for the activity, and have some fun.  It is called TimeSlips (TS) and was created by Professor of Theatre, Anne Basting at the Peck School of the Arts, the University of Wisconsin-Milwaukee in 1998.

In full disclosure, I am a bit biased as the first and now 1 of 2 Certified TimeSlips facilitators in my state of Louisiana (LA). I think we need 25, then 50, then 100 facilitators here even if that means less TS freelance opportunities for me. I will not possibly keep up with the demand when residences and facilities catch on to this. So, I encourage others to join our ranks - family members, volunteers, and professionals alike.

To see the TimeSlips Storytelling activity in your mind, imagine a room (free of distractions) with 6-12 persons with a dementia - varying ages and varying levels of cognition. The “storytellers” are seated in a half circle with a facilitator at the front of them, equipped with a white flipchart pad on easel and some markers.  Everyone has a nametag sticker on.  To start the session I distribute a picture printed on 8.5 x 11 paper (cardstock when possible) to each storyteller.  The Leaping Cowboy in this post is an example of a picture I use. I simply explain that we are going to create a story based on the picture. “I will ask you some questions and write down all of your answers with names of the contributor.  There are no wrong answers :) Let’s have fun.” For the next 20 minutes, the storytellers are engaged. They are laughing. They are joking.  They are happy.  In the end we have the flipchart page filled with a story that they are proud of.   As facilitator, I have put them in charge in creating something special.  After 1 or 2 stories, I shake each storyteller's hand and thank them for their input.  The smiles and reciprocated thank you’s are gold for a facilitator. 

You can enjoy my fun stories from my storytellers here.

Why does TimeSlips have this delightful effect on these groups that are so diverse, but who also have much in common? As the the TimeSlips staff will tell you, the activity does several things:

• Presents a fun challenge
• Returns a role back to people who have had so many roles taken away by dementia and then by society
• Strengthens the relationships of the storytellers
• Strengthens the relationships between the storytellers and staff, when the staff see the abilty of the storytellers.
• The Storytellers are engaged with a purpose and have their ideas validated.

Please check out this 2014 research article in the American Journal of Alzheimer's Disease and Related Dementias on TimeSlips Storytelling. 

Stay tuned to a future post describing my experiences as a Certified TimeSlips Facilitator, including some of the feedback from the Storytellers and Staff. In the meantime, please take action with this information. It is not enough to fill your head with interesting stuff!

Action Items:

• Watch this TEDx event with founder Anne Basting. 
• Read the stories that I have facilitated.
• Hear a 5 interview with facilitator Liz Nichols as she explains TimeSlips.
• Consider becoming a TimeSlips facilitator to make a difference in your family or in your facility.
• If you are a staff member, read more about TimeSlips and approach your leaders about becoming Certified Facilitator. Share the research article.  If management somehow says "no," be a leader for change and do it anyway on your time and on your dime.  Introduce it to your residents, invite the leaders, and show them it works. It can have a high impact and is not costly.  
• If you are a Family member with a loved one in a facility, ask management if they will bring TimeSlips to the residence. If not, ask why.  Be persistent. I hope that one day this is a program that residences can use to demonstrate how dementia-friendly they are. 

• Add a comment or question. 
• Share, Like, and +1 this article.
• Like us on FB and visit our website for a list of support groups and services.

Matt Estrade, MBA, CAPS is the Founder and Chief Mentor at Care Partner Mentoring, LLC in Covington/New Orleans, LA, USA. A more extensive biography can be found here.

Would You Break a Sweat to Save Your Brain?

Tis the season to begin thinking about new year's resolution and for sure, many will hit the gym, the pool, and the neighborhood pavement for a few months.

What if I could offer greater motivation, perhaps enough to start today in December?

As we become older adults, our brains begin to shrink or "atrophy" at a rate of 1-2% per year.  Scary, yes, but there may be something we can do about it.  We will focus on the hippocampus, the part of the brain "critical for establishing new memories, part of the brain most vulnerable in Alzheimer's Disease (AD) and vulnerable to aging."

As discussed in a very informative lecture by Professor Frank Longo, MD, PhD, Chairman of Neurology and Neurological Sciences at Stanford University, it is possible to grow your brain with daily exercise.

Dr. Longo cites a 2011 Prospective Randomized Controlled Trial (RCT) by Erikson et al. entitled 

"Exercise training increases size of hippocampus and improves memory."  RCTs are the gold standard in research trial design, showing cause and effect, not just association (or correlation) of factors.

Dr. Longo then imagined out loud how this good news may play out when speaking with a patient at his Stanford clinic:

"I have this new drug out, it's is going to reverse the shrinkage of your hippocampus- I know that sounds like science fiction- we have this drug that will reverse brain shrinkage... here are the side effects of this 'drug': less hypertension, less diabetes, and less depression... so you'd say write me a prescription, I'm ready. I'd tell you you need to do brisk walking, or some form of exercise, 30 minutes a day 5 days, you'd be really disappointed and probably wouldn't take it."

This, no doubt, will not stop Dr. Longo from offering the findings and encouragement. Of course, we should all still try to spread the news of the potential benefits of exercise. Will you make that difference?

I hope you consider this study and start lacing up your tennis shoes. Please do not see this as an all or nothing proposition.  If you can exercise 3 days a week, that is better than nothing. I'll post more research on prevention. The best way to find Peace with Dementia is to take steps to avoid developing it. Be well!

A special thanks to Dr. Longo for this presentation and Dr. Erikson and team for this important work.

Action Items:

• Decide if you want to reduce risk of hypertension, depression, diabetes, and dementia.
• If yes, find a cardiovascular activity that you enjoy doing - swimming, walking, cycling, etc.
• Add a comment or question. 
• Share, Like, and +1 this article.
• Like us on FB and visit our website for a list of support groups and services.

Matt Estrade, MBA, CAPS is the Founder and Chief Mentor at Care Partner Mentoring, LLC in Covington/New Orleans, LA, USA. A more extensive biography can be found here.

PubMed Citation of Study Discussed:

Proc Natl Acad Sci U S A. 2011 Feb 15;108(7):3017-22. doi: 10.1073/pnas.1015950108. Epub 2011 Jan 31.  Exercise training increases size of hippocampus and improves memory.
Erickson KI1, Voss MW, Prakash RS, Basak C, Szabo A, Chaddock L, Kim JS, Heo S, Alves H, White SM, Wojcicki TR, Mailey E, Vieira VJ, Martin SA, Pence BD, Woods JA, McAuley E, Kramer AF.

Individualized Music in Preventing and Soothing Agitation in Dementia

They say that music is the soundtrack of our lives. Most probably, this strikes a chord with you. Do you ever hear a song on the radio or television that for a moment transports you back to a distant place and time? Perhaps the memory is pleasant and reminds you of event like courting your spouse or your wedding.  A song may also bring back a painful memory such as a bad relationship or breakup. It could even be bittersweet, reminding you of a loved one who is no longer physically in your life. This blog post will tell you how music can create Peace with Dementia. As always, I offer some action steps if you are committed making Peace.

Music is a powerful thing.  According to Professor Linda A. Gerdner at the Stanford Geriatric Education Center, music can be used to sooth persons with dementia when they are agitated.  Agitation is a term used to describe "inappropriate verbal, vocal, or motor activity that is not explained by needs or confusion per se" (Cohen-Mansfield & Billig, 1986, p.712) as documented in Dr. Gerdner's presentation mentioned in the next paragraph.  When someone has a dementia, their "stress threshold" is lower, meaning that it takes even less distraction and disruption to become agitated (Richards-Hall & Buckwalter, 1987) as documented in Dr. Gerdner's presentation. Where you and I today may have a strong ability to keep our cool,  we will generally be set off more easily if we have dementia.  Using music in the proper way can help prevent agitation and also help calm someone down when agitated.

Dr. Gerdner has been studying the benefits of music for persons with dementia for 25 years. In 1996, she published her original evidence based guidelines which is in its 5th edition. In early 2015, Stanford uploaded this Dr. Gerdner presentation that you will enjoy.  I highly recommend viewing the presentation and focusing on these key points from Dr. Gerdner's research:

• It is important to know this a "music intervention" that can be used by family members and staff who follow Dr. Gerdner's evidence-based guidelines. This is not "music therapy" that is offered by therapists. 
• For music to effectively create peace, select songs and artists that you know are special to the person with dementia.
• Dr. Gerdner has developed two (2) assessments to assist you in exploring song selection.
• One (1) assessment is for persons in the early stages of dementia - Page 16 of the guidelines
• One (1) assessment is for a family care partner and/or professional care partner- Page 18 of the guidelines.
• Prevention of agitation is optimal. Dr. Gerdner recommends playing music 30 minutes prior to the time of day when it appears.  This takes looking for patterns and sources of agitation. 
• The only way to know if this will work for your loved one or a client is to try the selected songs and takes notes on progress.  When a songs works, write that down. When a song does not work, write that down. Discontinue songs that create more agitation.  The person with dementia is the expert from whom we take our cues.
• If music from a music player bothers other people, try comfortable headphones with a safe volume. Remember the person will like have different hearing ability as you, and not necessarily worse if they have a hearing device.
• Dr. Gerdner's research also discuss ethnic music that can be very powerful if they have not heard it in a very long time. Her above presentation includes two powerful examples of this.
• Naomi Feil, creator of Validation Therapy, is seen on this popular video of utilizing music to communicate with someone in repetitive motion and non-verbal.
• Here is a popular example of a gentleman coming alive with the help of his favorite music.

Action items for you to create Peace with Dementia:

• Review the PDF of Dr. Gerdner's Evidence Based Guidelines.
• Visit her Stanford page.
• Consider the idea of using individualized music to communicate with your loved one or client.
• Add a comment or question. 
• Like us on FB and visit our website for a list of support groups and services.

Matt Estrade, MBA, CAPS is the Founder and Chief Mentor at Care Partner Mentoring, LLC in Covington/New Orleans, LA, USA. A more extensive biography can be found here.

Holiday Tips for Peace with Dementia

The holidays should be peaceful and happy times. While they are positive for many people, these last months of the year certainly are busier times with holiday parties, shopping, and cooking. When you are a care partner for someone with dementia or have dementia yourself, the extra holiday tasks can make the holidays extra stressful.  Here are 2 links that may provide some appreciated information for you, along with some of my comments on the articles.

The first article is from the Mayo Clinic and discusses how to simplify the holidays this year.  These are good tips, but do remember that ultimately your loved one decides what are good ideas. For example, the article mentions to keep things low-key.  That is sage advice, unless your loved one with dementia love a loud party this year.  As a care partner, take care of yourself and do the best you can.  It is very hard to make everyone happy.

The second article/PDF is from the Alzheimer's Association regarding gift giving. Remember that this is just a good list of ideas and that no list is perfect.  It is divided up into different stages of dementia. You may not know the stage! When in doubt ask the family or professional care partner about what you are considering getting. While it may be well intentioned to get someone a memory aid, post it notes, a pad for writing down tasks, think about how the person with dementia will feel getting it.  It very well could be unintentionally insulting or make them feel like a child.  Instead, think about what hobbies they have always enjoyed, but keep it simple.  When in doubt, music or a music player can be a priceless gift that stimulates the mind and brings joy. Consider things that bring comfort on the list. Something not on the list are essential oils for aromatherapy.  Also, do not forget their care partner!  Offer a coupon book of hours to relieve them while they go to a movie, hair salon, or dinner.  Gift certificates for any of these place are nice as well, just remember they may need help to leave the house.

I hope you find this helpful and I welcome comments and additional holiday and gift ideas.

• As always, write your favorite ideas, make a plan to follow through and see how it goes! 
• Be flexible and go with the flow. Write down your successes and lessons learned.
• Add a comment or question. 
• Like us on FB and visit our website for a list of support groups and services.

Here's wishing you and your family and happy and peaceful holiday season!

Matt Estrade, MBA, CAPS is the Founder and Chief Mentor at Care Partner Mentoring, LLC in Covington/New Orleans, LA, USA. A more extensive biography can be found here.