Meaningful Activities for Persons Living with Dementia: Why and How

In his book A Life Worth Living: The Eden Alternative in Action, Dr. Bill Thomas (1996) states "Loneliness, helplessness, and boredom are impervious to the silver bullets of modern medicine" (p. 25).  In other words, there is no pill for the three conditions that he calls the "nursing home plagues."   These plagues, however, are not reserved for nursing homes or facilities only.  They appear in many private homes daily.

One important strategy to counter institutionalization in any environment is to offer meaningful activities.  Not just bingo. Not just shuffleboard. Not just folding laundry. Think individual interests.  

Geriatrician and colleague of Dr. Thomas, Dr. Allen Power (2010) discusses the role of engaging persons living with dementia in his book Dementia Beyond Drugs :

         A simple pleasure is just what the name implies: a simple activity one engages in regularly that     brings pleasure and satisfaction.  Everyone has one or more of these. The key is that each person's simple pleasures are highly individualized and often carry special meaning for the person. In fulfilling a simple pleasure, it is critical to obtain all of the little details that make it a special experience. (Power, 2010 p. 93 kindle)

A 2009 article by Kolanowski and colleagues discusses the use of recreational activities to reduce "behavioural symptoms" that typically frustrate both family and professional care partners (Kaolanowski, 2009 p27) rather than drug interventions.  Let's not forget the frustration of the person living with dementia. The symptoms include screaming, kicking, elopement (i.e. wandering).  They present evidence of past studies demonstrating that activities can reduce psychotropic medication use. One must truly partner with the person to try this change for the better.

Now, there are whole books written just on choosing the right activity and adapting it for the person's retained abilities.  This article will introduce discovering the interest behind activities, with future posts expanding on more details (but start implementing now with your instinct).

In order to find meaningful activities, we should look at a person's entire lifespan or career, hobbies, passions, and interests.  This may sound like a daunting task, and it sure could be!

Wouldn't it be great to have a list of topics that help to discover personal interests so you could offer something to counter loneliness, helplessness, and boredom?

Enter the Farrington Leisure Interest Inventory (FLII).  Professor Marianne Smith and her colleagues at the Iowa Geriatric Education Center (IGEC) collaborated with Dr. Linda Buettner to adapt a version for use in IGEC's activity-focused dementia training program.

This checklist of over 150 items will allow you to ask your loved one or client about activities that may pique their interest. My hope is that YOU will consider using this free resource to discover things that will delight your loved one or client.

"But I know everything about ...my Dad, Mom, Husband, Wife, etc..." you say?

Consider these points:

1. The human life is so rich, complex, and interesting; there are likely things that we do not know about each other.

2. Perhaps the person living with dementia is on a Trip Back in Time to their childhood with hobbies that you do not know about?  How will you discover them?

3. You may be a professional Care Partner just meeting a client with dementia with little or no access to the person's family.

4. Perhaps you will uncover an interest that they never had a chance to explore in their busy life.

Professor Smith tells the story of a woman with whom she was reviewing the FLII. When they got to the topic of motorcycles, the woman told the story of how she traveled cross-country on a motorcycle.  Who would have known?!  Of course, she is probably not going to be riding a Harley soon, but there are other enriching activities that can be created around motorcycles of that era.

Not only will this survey help uncover topics of meaningful activities, but it could also create a stronger bond between professional Care Partner and client. As the Care Partner goes through the Farrington Leisure Interest Inventory, he or she will start to see the whole person with decades of life and experience.

This FLII asks one question regarding enjoyable music, which is a very rich topic deserving its own assessment.  I recommend reading my article on preventing and soothing agitation in dementia that includes a music assessment.

As always, be cautious of overwhelming the person living with dementia (or anyone). Break up the FLII over time if needed. Also, the music preference survey may be offered another time.

Now it is time to put this knowledge to use and create Peace with Dementia. Tell us about your experiences with meaningful activities and when you use the Farrington Leisure Interest Inventory.

If you appreciate this article, don't keep it all to yourself.  Please share so that more persons living with dementia can benefit!

Update: In the original version of this article, I stated that Professor Marianne Smith and her team at Iowa Geriatric Education Center created the Farrington Leisure Interest Inventory.  This was my mistake when I misread Dr. Smith's email to me. As Professor Smith says in the comments section below, she and her team "collaborated with Dr. Linda Buettner to adapt a version for use in our activity-focused dementia training program." This post has been corrected.

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.

Literature cited:

Kolanowski, A., Fick, D. M., & Buettner, L. (2009). Recreational Activities to Reduce Behavioural Symptoms in Dementia. Geriatrics and Aging, 12(1), 37-42. Retrieved May 1, 2016, from https://healthplexus.net/files/content/2009/January/1201dementia.pdf.

Power, G. Allen. (2010). Dementia Beyond Drugs: Changing the Culture of Care. Baltimore, MD: Health Professions Press. 

Smith, M., Buckwalter, K., Buettner, L., & Seydel, L. (2010). Farrington Leisure Interest Survey from Dementia Training to Improve Involvement in Meaningful Activity. The Iowa Geriatric Education Center, The University of Iowa: Iowa City. 

Smith, M., (2010). Non-Pharmacological Management of Behavior Problems in Dementia [iTunes U Podcast]. The Iowa Geriatric Education Center & The University of Iowa College of Nursing, The University of Iowa: Iowa City. Retrieved from http://itunes.apple.com.

Thomas, William. (1996). A Life Worth Living: The Eden Alternative in Action. Acton, MA: Vander Wyk & Burnham.

Finding Peace of Mind Now (and Later) with Discussing Your End of Life Care Wishes

Ben Franklin is known to have said that "but in this world nothing can be said to be certain, except death and taxes.” And just as we will pay our taxes on or before April 15th, the next day we recognize the importance of death, or at least, the importance of discussing End of Life care decisions.  

April 16th is the National Healthcare Decisions Day. 

This article will discuss a tool to let your wishes be known. I hope to persuade you to record your healthcare wishes for your loved ones, and to help them record their wishes.

There are understandable reasons to avoid 'The Conversation.' Death is a difficult topic to bring up, so we put it off to another day or never have the talk.

Just speaking in practical terms, when you decide not to have this conversation, you let someone else decide your level of comfort.

Did I say 'decide'?  I meant 'guess.'

That does not seem fair to you. After all, you have preferences.

Then consider being on the guessing end for a loved one who never expressed what they wanted at the end of life?  What if they told you, but you cannot remember because you are now scared and upset?  What if one family member disagrees with your memory of Mom's wishes and you cannot prove it?  Much of this stress can be avoided.

There can be a sense of dread, stress, and torment for someone trying to decide on behalf of a loved one.  Conversely, there can be a sense of comfort for a family when they can honor the wishes of a loved one.

A 2012 meta-synthesis of family interviews in the Journal of Hospice and Palliative Nursing by Jackson et al found "The discussion around Advanced Directives and End of Life preferences with family members prior to and during decline was strongly suggested by the majority of the families. Families did report that the more detailed the loved one's wishes were, the easier it was to make decisions at the end of life. The removal of the decision-making burden from families was noted as being one of the most important benefits of having Advanced Directives..." (Jackson 2012)

There are three common tools in advanced directives:

• Durable Healthcare Power of Attorney- Allows you to appoint who will make healthcare decisions when you are able. See an attorney for this service.

• Living Will - You can see my home state's document here. It's a government form. Need I say more? All kidding aside, take a look and compare it to my preference and focus...

• The Five Wishes document from Aging with Dignity- This is a wonderful document that I encourage everyone to consider completing to express their answers to 5 important questions:

1. Who is the person I want to make care decisions for me when I can't? (In legal terms - Durable Healthcare Power of Attorney)
2. What kind of medical treatment I want or do not want? (In legal terms- Living Will)
3. How comfortable do I want to be?
4. How do I want people to treat me?
5. What do I want my loved ones to know?

The Five Wishes is a rich guide to promoting discussion of some very meaningful decisions. Do I want my loved ones to pray by my bedside even when I am not awake? Sure! Had not occurred to me, but I'd love that. This document is accepted in 42 states (and D.C.), with 4 states requiring notarization.  The actual form does cost $5, but it's an invaluable guide and, the fee supports their mission of promoting advanced healthcare decision making. It can also be completed online. Two persons over 18 must sign as a witness to your Five Wishes, and there is a list of persons who cannot be witnesses (e.g. your doctor, a blood relative, spouse, or adopted child). Of course even with a Five  Wishes in place, there can still be some uncertainty. Having one will greatly reduce the uncertainty compared to not having one at all.

How did I complete the Five Wishes?

I completed my document with Post-It  Notes.  Over 7 days, I visited it once a day, making changes, replacing notes, and considering many options. In this process, I was able to brainstorm and not feel the pressure of completing the document in one day.  I spoke with my loved ones about my wishes, especially those who are named as healthcare decision-maker and the backup decision- makers.

Considering Your Loved Ones

While these are your choices, it is still important to consider the people who will help you carry out the wishes.  Remember your death is an emotional time for your loved ones who will do their best to carry out what you write down.  I tested some of my wishes.  For example, would my wife be upset that I preferred cremation?  Turns out she does not mind, but I would have reconsidered my choice if it bothered her. 

So here's a Blank Sample of the Five Wishes Document

Take Action

If you complete a 5 Wishes document, subscribe to the Peace with Dementia Blog, and email me that you have completed 5 Wishes by May 16, 2016, you will have a chance to win a $25 Amazon gift card. Your chances are probably very good! (No need to send your document)

If you feel this is worth sharing, please do so via email, Twitter, FaceBook, etc.

Interested in more info on Five Wishes?  Check out this interview with Aging in Dignity President, Mr. Paul Malley.

In the future, I will cover POLST  (LaPOST in Louisiana) for advanced stages of diseases. For now, the Five Wishes is something all of us over 18 should do.

NB: I have no affiliation with Aging with Dignity, publisher of Five Wishes. Just a big fan!

In Peace,

Matt

Follow me on Twitter @mwestrade PeaceWithDementia

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.

Literature cited:
Jackson, J., Derderian, L., White, P., Ayotte, J., Fiorini, J., Hall, R. O., & Shay, J. T. (2012). Family Perspectives on End-of-Life Care. Journal of Hospice & Palliative Nursing, 14(4), 303-311. doi:10.1097/njh.0b013e31824ea249

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.






  

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.