Creative Arts Therapist on Your Dementia Care Team?

Artful Approach, Caregiver's Journey, Dementia Compass

On a Tuesday afternoon, I was going around the halls of an assisted living community inviting people to a program I was about to lead. There was a gentleman there who I always looked forward to saying hi to, knowing quite frequently he would turn down my invitation but enjoyed a brief visit. On this particular afternoon, as I knocked on his door and saw him sitting in his chair, I could see he was waking up from a nap. He looked distressed as I greeted him. The world I walked into that afternoon was that of a battlefield. This man, who had dementia, was reliving his time at war. I could see the trauma in his eyes, the fear in his hands.

At a jewelry store in town, I met a woman whose mother had dementia. Once she learned that I worked with this population she shared moments when her mom would go off into these worlds and she didn’t know what to do. She learned not to fight her mother, but she no longer felt she could connect with her mom whom she loved deeply. She could feel their lives separating.

While leaving a skilled care community I stopped to talk with a family member of a resident who recently passed away after living with dementia for several years. She shared with me no longer knew who she was and struggled to see life without spending each day visiting mom. She feared what daily life would become and the impact this would have on her relationships.

These are common stories one might hear when living with dementia.

We all possess the ability to enter into the world of someone with dementia. We all are able to sit and listen to the stories we share with each other. We all are capable of walking with another person through their struggles. This takes no special skill, no extra training, no letters behind our name. But, what would the impact be like if we invited someone with a little extra training and skills into the picture? What if we invited a Creative Arts Therapist to take a seat on our care team, joining the geriatricians, general practice doctors, elder law attorneys, financial advisors, social workers, pharmacists, nurses, priests or other religious, neurologists, and a selection of family members?

This week is Creative Arts Therapies week. It is a week where all of the fields within the Creative Art Therapies take extra time to promote the work they do in our community and share with us the role they might play in our lives. This includes Music Therapists, Art Therapists, Drama Therapists, Dance/Movement Therapists. They are individuals with special training to combine the already known power of the arts with a skillfully directed therapeutic practice. Their current role in dementia care is often that of Glorified Life Enrichment Specialist, and that may be at times the role they play, but it can be greater than that. They can sit with those who might be reliving a trauma, are struggling with the loss of a husband or their home, a diagnosis. They can support the amazing artist that come into our communities to lead programs based on the visual, performing and written arts. They can show us how to enter the world of our loved ones with dementia. They can aid us in healing during and after our dementia journey. And, they can be the bridge between the medical and non-medical side of caregiving.

Each field within the creative arts therapies can play a special role in our care, for we each have our own connection to one specific art form over another. They can partner with artists, physical therapists, nurses, and doctors to help increase the quality of care and daily living. Frequently I hear concerns about inviting arts therapist into the picture, they say they already have artist providing art therapy yet these individuals frequently are not art therapists, but an artist using the arts in a therapeutic way. (There is a difference that would be a conversation for another time.) Or they feel that the world the of our care communities is already too medicalized and having a creative arts therapist involved would be adding to the medical world. While I agree that we don’t need a creative arts therapist to be able to benefit from the arts and that our care communities lean too far into the medical realm there is still a seat at the table for these specific fields. What a creative arts therapist provides is not more of the same, but something that can partner with programs and with individuals that might need more than the basic elements of the arts. They can add a depth to the care provided. A creative arts therapist can help the families learn how to communicate and transition into this new chapter of the relationship with their loved one, and, once the time has come, help them heal and rediscover their own life once the role of caregiver has been taken away. They can sit with our care community staff and help them navigate their job and minimize the burnout and depression that comes from working with loss day in and day out.

Use the arts with your loved one and for yourself. Find moments of joy, creativity, and satisfaction and growth through the arts, then I invite you to think about the creative arts therapies. Consider opening up a spot on the care team for a Creative Arts Therapist both for your loved one and for yourself. You might be amazed at how they can help you during this time and how we have been limiting the impact they can have on those living with dementia. What has been shared above is just a peek into what is possible.

To learn more about the Creative Arts Therapies and to find a Creative Arts Therapist in your area (credentials to look for):

Drama Therapy   (RDT or RDT-BCT)

Music Therapy  (MT-BC)

Art Therapy   (ATR or ATR-BC)

Dance Therapy    (R-DMT-BC-DMT)



Personal Library: Start with YES!

Artful Approach, Caregiver's Journey, Dementia Compass

“The culture shift we envision begins with communication and ends with connection,” writes Cathy Braxton and Tami Neumann on page 11 of their book, Start with Yes! A Unique Way to Communicate with Persons Living with Dementia. They are the creators of the DementiaRAW method. In a world (mostly internet world) that is filled with too much information to possibly sort through on the topic of dementia, they get to the heart of what a caregiver needs to form better connections and provide better care. They have shown us how to apply improv and the workings of basic human seeking to dementia. Many of you know that I love working with people who understand theatre because they know how to jump in, jump into the world of the person they are caring for, jump into the flexible roles, and jump into creativity.  This book shows us how to start becoming better caregivers, friends, family members, and neighbors to those living with one of the many diseases that fall under the dementia umbrella by learning how to jump in. It is short enough to be a realistic and practical guide, yet deep enough to actually be resourceful. It is a book all should have in their personal library.

We all long for connection. Connection to each other, to our world, to our own lives. We can develop that connection through communication, and the appropriate form of communication. In the dense and often overly medical and academic (and frequently negative) guides out there, this book is a gem. Thank you, Tami and Cathy!

To Seek Forgiveness

Caregiver's Journey, Dementia Compass

When dementia and forgiveness are thrown into the same sentence it is common to first think of forgiving the person with dementia, to reconcile past hurts and wrongdoings. But, what about other family members? What about forgiving brothers, sisters, aunts, uncles, cousins? What about forgiving ourselves? What about the care team?

No one is perfect. That is not a dementia statement, but a human statement. All of us carry the need to forgive and the need to ask for forgiveness. We seek healing, not always sure how to get it, fearful of how it might change a relationship, and maybe not for the better. In the context of dementia, how do we forgive our family and friends for how they might have treated our loved one? Do they even know forgiveness is needed, that they caused harm? Dementia is a thorn in life. It is scary, difficult, taxing, sad. It is loss, change, and transition. Just as each person with dementia will have a different journey, so too will the family members. Harm may be unknowingly done because of a lack of understanding or education. Hurt can come from the stress of daily life colliding with the fears of dementia and if we are an adequate care partner. Pain can come from a family member no longer knowing how to communicate with, or help their loved one, and so they lash out. We don’t understand why the person we are caring for is not adhering to the schedule or the new plan for medication distribution. We wonder why they are acting out of character, or have changed a behavior. Yelling, cornering, ignoring, denial, these are some of the actions our family members may take, we may take, when trying to care for our loved one with dementia. We must forgive ourselves and our family. Once the person has passed away, we, the family, remain. Allowing these feelings to fester with each encounter, or thought of the other person only allows more thorns to grow, and we get pricked enough during this chapter of our lives. We need to forgive regardless of the ability to fully reconcile. Forgiveness becomes the rose.

When our loved one is diagnosed with dementia we do our best to assemble a care team, find the right in-home care company or care community. The care may not be to the standards we expect. We may get angry or frustrated at the way they are approaching care. We need to forgive these individuals as well, even if elder abuse is occurring, we need to forgive. You MUST NEVER accept the abuse or allow it to continue. Anyone who knows me, knows I have zero tolerance for any form of abuse. That requires you to take action. But once your loved one is safe and at peace once more, you may forgive, if only for your own peace.

Forgiveness is tricky. It is something that everyone with a pulse struggles with throughout their life. We struggle to ask for forgiveness, to see that we need to forgive or be forgiven. We struggle to engage in the act of forgiveness; one that may take a lifetime. Despite these struggles, it is necessary. Years may have passed, some of these people may no longer be in our lives, but seek to forgive, including forgiving yourself.

The Lenten Season and Dementia

Dementia Compass, Faith Filled Journey

We are now less than a week away from Ash Wednesday and the start of Lent. This is a day that starts a 40-day journey of fasting, prayer, and almsgiving. It is a special day (though not a Holy Day of Obligation) and one that should be treated as such. For many of those living with dementia, this is has become another day of the year, another moment blurring together with other moments, and not by choice, but by loss. Many care partners and care communities (unless placed in an excellent Catholic, Methodist, or Lutheran community) don’t see this day as important for the one they care for, feeling that because they don’t know what day it is, or may not remember this day, faith yet again is thrown out when it should instead be placed prominently in a person’s life. I know not all of you are Christian, or even religious, but if the person we are caring for is, then how can we respect their faith? How can we help them on this Lenten journey?

As always I speak through the lens of a practicing Catholic, please feel free to adjust what I share to match the faith of those you care for each day. If you yourself are unfamiliar with the Lenten season reach out to those who are, myself included, and work with them. A spiritual and religious life is included in living well with dementia. Each person you care for will be in different places in faith life and in their dementia, adjust to both their physical and spiritual needs instead of throwing up your arms and tossing faith out. While Lent is frequently about what we give up and sacrifice, the season should not be another moment lost because of dementia.

Here are a few recommendations and thoughts about how we can help our loved ones live well through this upcoming Lenten season.

On Ash Wednesday: If you can (and try hard to makes this happen) take your loved one to Mass/service. Allow them to come together in communion with fellow members of the church to receive the ashes, hear the readings, and receive communion. If this is not feasible go to them, offer to read the readings (they are always available online), pray with them, and find a way to get them the ashes. “Remember that you are dust, and to dust you shall return.” This powerful message for all of us is especially impactful for those who are nearing the end of their life. It is not a message of doom, but one of great hope. One that inspires us to move closer to Jesus so that we might be reunited with him.

Throughout Lent, we are asked to do three things. Pray, Fast, and Give Alms.
Prayer: This is something that should continue throughout the year regardless of the season. Pray with your loved one, find a spiritual director, deacon, priest, religious sisters, or other lay ministers and residents who might come together to pray. Even if they are unable to speak, invite them to sit with you to listen to the familiar rhythm of the prayers, finding comfort in the words. If there are books you can read out loud or in a book club format include this in your care plan and programming. Books like Matthew Kelly’s Rediscover Jesus, are written in short chunks that don’t require you to remember from day to day what you read. Help them attend Mass/service each week. Set aside time to listen to a faith-based podcast or Relevant Radio each day. Cultivate a group of individuals in the care community that can pray together. Bring a crucifix and rosary into their room if they don’t have one already. Bring Holy Water with you during your visit. Use the devotionals the church prints each year.
Fasting: Now, they don’t have to fast (one normal meal and two small meals that make up no more than one normal meal) or abstain from meat, but if they want to and it is in keeping with what is healthy and safe for them to do, allow them to do so. Don’t fight it, embrace it. This includes Ash Wednesday, Fridays during Lent and on Good Friday. Fasting is also more than food, and because of dietary restrictions, this may not be an option. Work with your loved one to find something that they may fast from during this time. It can be from negative language or a set time of TV. I once met a woman who fasted from wearing her favorite sweater during this time, as a way to remind herself that there is more to life than her favorite sweater. Get creative!
Almsgiving: Almsgiving typically means money. A sticky situation when working with a loved one with dementia. So if the giving of money during the time is not an option, you may get creative here as well. Maybe it is sending cards to the staff at the care community, working to be more positive about life, attending programs and events when someone extends an invitation (so long as they are safely able to do so) or giving that bingo prize to someone else in the group. There are many ways to give that are not financial.

During Holy Week: Help them attend Mass/service on Palm Sunday, Holy Thursday, Good Friday, and Easter Sunday, or spend extra time in prayer with them on these days. Bringing them a blessed palm and communion on Sunday, reading the 7 Last Words on Good Friday, and singing Alleluia with them on Easter Sunday. Allow this week, and these moments to bring a new joy to their life. Support them in their spiritual growth, help them grow closer to Christ.

If you have any questions about this time, this season, or are struggling to help your loved one on their Lenten journey, reach out. Email me, contact your local church or care community chaplain. We are here to help. May God bless you as you care for your loved ones with dementia. May He guide both of you this Lenten and Easter season.


The Depth of a Life

Dementia Compass

Have we become complacent in care? In Life Enrichment? Have we thrown around term “Person-Centered Care” so much that it has lost meaning? Have we felt a lingering burnout and forget to become relational with the person we are caring for? Far too often when a new employee comes on board, they are giving a 2-minute briefing about a resident, then told to look at the board outside their door or at the possessions in their room in order to get to know a resident. This small segment of information does not show the life each individual has lived, yet it is relied on by care professionals and seen as enough knowledge to proved proper care. They believe that in taking in only this information they now know the person, have become relational with this person and can do their job successfully. It is time to reconsider this belief. We frequently feel that there are not enough hours in a day to learn more than what this picture shares, but how can we provide care without learning more?

When looking in a person’s room or the objects outside of their door, more often than not we see only what the family has selected, what they feel is important to share. It is another person’s narrative of the life of the individual sitting in front of us. The comments made by fellow co-workers is again, another person’s narrative. It can be cold, short, and sometimes inaccurate. Dementia or not, the person’s narrative of their own life is far more impactful and informative. When we look beyond this layer, we understand the deep, dynamic, beautiful life this person has lived and wishes to continue to live. Only when we use this information as a launching point towards becoming relational can we provide the best care and support possible. There is a major hurdle to becoming relational with a person with dementia, and it is not what you might think. It is not their memory or loss of language that makes it difficult. The biggest challenge is that frequently fellow staff warn their co-workers and volunteers about the residents, instead of inviting them to get to know each individual they will encounter. They become a care machine that erases the freedom of time to sit and talk or sit in silence with a resident. A life is more than a collection of things in a room. They are more than the chart at the nurse’s station. They are more than the warnings from fellow staff.  Can we really enter into a relationship when we have warnings and judgments about who this person might be? I was once told to watch out for a resident, for they will surely make me cry. That this person is nasty and cold. I have been warned about a resident who was labeled as a challenge and a disruptor, not worthy of engaging in conversation with under any circumstance. Do you want to know something? They become two of my favorite residents, and they impacted my life as much as I hope I impacted their lives. I frequently was the only person to speak with them other than for medical purposes. Their belongings and chart became human only at the moment when I was willing to enter into a relationship with these residents, allowing me to provide the programming and support they were seeking.

Life does not end, the individual’s interests, stories, and joys do not disappear when they move into a care community. Care communities in general lean too heavily on the chart, and a second “chart,” the possessions in the resident’s room. If that was our only knowledge, one would never know the struggles and triumphs in a person’s life that made them into the person we see before us. These individuals would remain a 2-dimensional task item on a list of to-dos.

The work of a care team, from the CNAs to the Life Enrichment team, to the doctors, is fast-paced. Many are often overworked, having limited time available to spend with each resident. They fear HIPPA and the Ethics boards and use it as an excuse to avoid becoming relational with a resident. (If you are working within your scope of practice, and are not sharing the information with others, you are okay.) It is the sad nature of health care. I must ask the question though, if you don’t take the time to become relational with the individual, to really get to know them, beyond a medical chart, beyond examining their belongings, can you really care for an individual properly? Do you simply prescribe medications and complete tasks that you masquerade as care? Do you see them as a burden because they will not play bingo, and then force coloring books on them so that you may fulfill your team’s engagement quota? Or, do you care for the person at this moment, in this moment, and work to improve their life? How can we make the time to SEE the person, to become relational, to provide care that is directed by their interests, needs, and desires? How can we change the way healthcare operates, transforming this “machine” into a community, one that is constantly willing the good of the other? Isn’t that what we are all seeking anyway? Isn’t that what pulled us into the work we do in the first place?

Each person we care for has lived a dynamic, complex life, one that is still evolving, growing, seeking. The chart, the words of our co-workers, and the objects in a room can help us crack open the book, but it hardly tells us the story. Find the time. Make the time. Engage. Seek to know the depth of a life.

The Unexpecte​d Gift

Dementia Compass, Personal Story of Dementia

When I was 10 years old, I learned that traditions will change, come to an end, or begin. They would change not because I was getting older or living in different cities, but because of events in life that can change our family. The Christmas of 1999 was the first Christmas after my grandfather’s stroke, and the first Christmas my grandma would be spending without Poppa’s help to prepare for the holidays. That year we started a tradition that would take place on the third weekend of Advent. I would go over to her house and help her decorate the Christmas tree. It started simple. We would decorate together, listen to Christmas music, and I would frequently spend the night. Through this, I experienced the changing of traditions and realized that the childhood Christmas I lived for would not always be recreated year after year, just as I knew and loved. That because of my grandfather’s stroke, things changed. Change we didn’t necessarily want, but where required to accept because of events that took place in our lives. We kept up this tree decorating tradition until my grandma’s last Christmas in her house in 2007.

As time passed I had to admit that my grandmother was getting older, but not just older, that she had Vascular Dementia. That first Christmas after her diagnosis in 2005, was when I started to help her with additional preparations. I began helping her wrap presents for family and friends, seal Christmas card envelopes, put up other decorations around the house, I took a larger role in baking cookies, and, once I had my driver’s license, I would take her Christmas shopping. Eventually, my grandma no longer actively placed ornaments on the tree but would watch, and we would talk as I hung each ornament on the tree, sometimes where she dictated one to go. Despite the sadness of my grandmother’s decline, the new traditions didn’t feel like a burden, but a gift. They became a way for me to first admit that she was getting older, had dementia, and was declining. This allowed me to cherish each moment with her, as well learning to see moments I spent with others in my life who I suddenly realized, would not always be around. It was a gift to learn that at the end of the day, it is not the exact placement of the decorations and the type of wrapping paper used or even the exact Mass time and place we attended (one I still struggle with) that make Christmas. It was recognizing at I am spending time with people who mean the world to me. I learned to see in the moment that these individuals, these family members, and friends are what enrich my life and this season. I have always been a thoughtful child, or shall I say aware child, but it was her diagnosis with dementia that deepened what I was seeing, causing me to fully admit what I didn’t want to be true and in doing so, allowed me to enjoy each moment instead of fearing its end.
The Christmas of 2008, after my grandma moved into a nursing home, was the first Christmas I didn’t decorate her tree, but as I had learned 9 years ago, it was the time spent with her that was the tradition, not the tree itself. So, every third weekend of Advent, I would go visit her bringing with me a plate of cookies. We would talk or sit in silence together and look at the decorations around the nursing home. She has now passed away and what was our tradition is now a memory. I am grateful for the gift to have recognized the role she played in my life in helping me to see the important role all of my grandparents, parents, my brother, and my great aunts and uncles play in my life.


As the preparations are made for our loved ones with dementia, remember the gifts of the moment, that despite the presence of dementia, we don’t have to allow traditions to fold and crumble, we simply need to alter. That the time you spend with these individuals this day, and all days, is treasured gold. No one knows if it would be a good day or a bad day, if they are well or ill, what they will remember or forget. Leave those worries of the day with God, and allow the gift of still being able to hug them, “Merry Christmas” be what you remember, what you look forward too, and what you cherish. Take pictures,  journal about the time together and stories shared, set aside your differences with family and friends, and know that this time together is their gift to you.

Thanksgiving With Your Loved Ones

Dementia Compass

Happy Thanksgiving! As we prepare our tables, our turkeys, and our homes for our Thanksgiving celebrations, might we take a moment to prepare our day for those who have dementia. Holidays, especially the kind with lots of movement, people, and conversations, can be more of a nightmare more than a celebration for those living with dementia. I have adopted a list from Purple Table Reservations as a guide for the season to come.

1. Have your meal at noon, or earlier in the day instead of a late meal that might happen around sundown or after dark.

2. Create a place in your home where your loved one (and even yourself!) can escape to during the gathering. Keep it as a quiet place, one for sitting and resting or having a conversation between two people without the surrounding noise.

3. Make sure that all attending are aware of the individuals dementia and that their loved one may not act as they have known them to act. Be careful to still make sure the individual’s dignity remains.

4. If you like to have games and activities going, included your loved one in selecting and participating. Encourage all generations to interact with each other, and make sure that there is a way for all to participate.

5. When selecting your playlist, play songs that are orchestral or instrumental instead of those with lyrics. This will decrease the background noise that can cause confusion and make it difficult to participate in conversations.

6. Think about how you are setting the table and serving food. Buffett or server style is best, and try to only put out what you need at that moment when it comes to plates and silverware. This helps direct them to what they will need to use for each course/dish as well as help them select the food they enjoy instead of being overwhelmed by the choices.

7. If you are traveling, allow extra time for travel in addition to accounting for traffic.

8. Remain calm and patient. Your loved ones will pick up on your emotions and reflect them back to you.

9. Make sure there is enough walking room for your loved ones to get around the table and other areas where you will be in the house.

10. Know that if you ever need help the Alzheimer’s Association has a 24-hour helpline that can help you. 1.800.272.3900

This is a list of suggestions. Only you will know the details of how to best celebrate this holiday season with your loved ones. Take pictures, write down stories, and enjoy the moments you have.


Happy Thanksgiving!

World Alzheimer’s Month Recap

Dementia Compass, Understanding Dementia

Over on the Facebook page, I have posted resources and things to consider when it comes to living well with dementia. Below is the recap of this past month.

Day One: “When you have met one person with dementia, you have met one person.” This is frequently said by those working in dementia care and is the key and first step to erasing the stigma surrounding dementia. A dementia diagnosis does not override the person, who they were, their life, their stories, their joys, their love, their being, and especially their worth. Each individual you meet will have a different journey, each care partner, theirs.  Everyone will have their own struggles, needs, and losses. They carry with them the life they lived and their desires for the remainder of their life. When you have met one person, you have met one person. They are more than a diagnosis, a chart, or a tag on a wheelchair or nursing room door. They are not people you can clump together the way you might items in your home. They are human, still needing love and respect, still giving love and joy. Let’s include them in on their care.

Day Two: Memory Cafés are a wonderful program that both the individual with dementia and the care partner can do together. Use this directory to find a café in your area and more about the experience.

Day Three: Remember that dementia is not just for those over 65. There are individuals who are diagnosed in their 20s, 30s, 40s, and 50s. They are often underserved as a result of being too young to move into many care communities, yet can no longer live in their home. Or, they are brushed off by doctors, medical care partners, and social care partners, for the reason of, “Dementia is only for the old.” This statement, however, is false. What can we do? Open our hearts and time to be there for these individuals, encourage programs and care communities in our cities to welcome and care for those with dementia regardless of their age.

Day Four: Ice cream! As we close out this summer season, how could I not mention ice cream? The power a dish of ice cream has is remarkable. It is simple. It is enjoyable. When going to visit a loved one with dementia we are often nervous about our visit, worried what type of day they are having, wondering if we will we sit with great conversation or in great agony? By arriving with their favorite flavor of ice cream, you instantly have a joy-filled moment. (It also can aid in sundowning, but more on that at a later date.) I encourage you to try it sometime. Arrive on a Sunday afternoon for a visit, with ice cream in hand and suddenly you have something to share, something that doesn’t require great conversation or effort, and one that doesn’t require them to be having a good day or a bad day. Sitting together with your dish of ice cream will become that emotional memory of, “I had a good day today” and that is one of the best gifts we can give someone with dementia.

Day Five: The Purple Angel campaign. If you look at this page’s profile photo, that is the Purple Angel. The Purple Angel is a global program with the goal of building dementia-friendly communities by going to local places of business, providing a short dementia training, and in doing so helping those with dementia and their care partners continue to live fully, with decreased stigma in their community. It, of course, is so much more than this, so click on the link and learn more about the great work of the Purple Angel campaign. Discern becoming a Purple Angel Ambassador yourself.

Day Six: A new resource I discovered yesterday, AlzAuthors. They are a connection to the books written about dementia as well as authors themselves. Linked is their website. They also have a Facebook page under Alzheimer’s and Dementia Resources, and a Twitter page under AlzAuthors. And, they were the guests of Alzheimer’s Speaks Radio this week,…/the-alz-authors-share-their-stor… hosted by Lori La Bey, another wonderful resource in dementia.

Day Seven: Bingo! Did anyone shut down when I said that word? I often do. Bingo is a popular program for care communities and is seen as a heavy hitter, bringing lots of people out. But, do they come out because they love the game or the company? I don’t believe we should throw the bingo cards in the trash, however, we cannot call it Life Enrichment. It is an activity, that can become a launching point for other programs. If you work in a care community, before you put bingo on the schedule for next week, find out why people come out for it? Do they love the game? Or do they love the company? Look for a longer post about this controversial programming subject on the website later this fall.

Day Eight: Teepa Snow’s GEMS. Teepa Snow is a name you will hear me bring up often. Teepa is one of the leading dementia educators in the United States and has developed a training program that breaks down the stages of dementia into 6 segments. It is a training you can take time and time again and learn something new each time. While she is not the only voice in dementia education, she has created the best overview training programs. Check it out and you will be amazed at how much easier it will help you relate and become relational to those with dementia.

Day Nine: I sometimes get asked what questions to ask when touring care communities. I came across this list today that I believe is a good start. Just like when you are touring college campuses, you cannot trust the pictures and brochures to be 100% accurate to the reality of life in the assisted living. So ask questions, both of the administration, and of yourself and loved one. In the case of dementia look at what the big picture care plan is, and how they might transition within the community. The fewer the moves the better.

Day Ten: Museum Programs. Across this country, from the Frye Museum in Seattle, to SPARK! in the Wisconsin/Minnesota, to the Connect2Culture arts affiliate programs in New York City, there are ways to see the Great Masters of art, music, theatre, and dance. I encourage you to see what is available in your area and encourage programs to form if there is a void.

Day Eleven: Language. Caregiver or Care Partner? Care Community or Care Facility? Elderly or Older Adult? Suffering from or Living With? The language we use when talking about dementia and dementia care does matter but doesn’t always align with what is perceived to be politically correct, or what we as those without dementia often use. I have over the past year asked those with dementia (as well as those over 70) what they prefer. Here is what I heard: Caregiver or Care Partner, it doesn’t matter but family and friends are what they seek. Care Community and Home to describe Assisted Living and Nursing/Skilled Care Homes. Elder or Elderly is often preferred. For some the reason was that it indicated that they are wise, respected, filled with stories of life. Finally, Living with dementia. This phrase won with everyone. This is what I have been told, I encourage you to seek and use the language that those you care for prefer, not necessarily what the industry tells us to use.

Day Twelve: A phrase often spoken, and frequently forgotten, “We work in their home. They don’t live in our workplace.” For those of us who work in care communities or as in-home care partners, our job takes place in their home, and so while we still have a job to do, we are also guests. As guests in their home, there comes a need for a level of respect, dignity, and care for the individual’s life and home.

Day Thirteen: Visiting someone with dementia. This link will lead you to what I find to be a great list of tips for visiting someone with dementia. It is not easy, but it is crucial that we continue to visit, support, and love those with dementia.

Day Fourteen: Dementia Raw! Some of my favorite people to collaborate with in dementia care are theatre people, those who have an understanding of improvisation. I have already spoken about the need to be able to say, “Yes, and…” and Dementia Raw is a direct resource that can help you better understand and fine-tune this crucial skill.

Day Fifteen: Inspired by Mindy Bolton of Shay’s Way, Intergenerational Relationships, and Programs. The post I wrote earlier this week touched on the importance of becoming relational with those older than us regardless of if they have dementia or not. There are programs and research, and very academic articles published regarding this idea out there. As always, these are needed, but it does not need to be complex. Start by visiting older relatives, join church ministries that might serve the older adults in your faith community, volunteer at assisted living or nursing home communities, or take time to have short conversations with your neighbors who might be a generation or two older than you. You will change both of your lives by doing so.

Day Sixteen: CaringKind. For those of you in the New York area, this is a direct resource, providing support groups and other forms of assistance. For those of you who are not in the New York area, it can be a place of education and guidance. As a member of the Junior Committee, I can speak to the importance of this organization and the great impact they have on the community in terms of research, support, and education.

Day Seventeen: Fox Valley Memory Project. If you are in the North East Wisconsin area, the Memory Project is a fantastic resource that hosts multiple Memory Cafés, outings, as well as being a place for support and education.

Day Eighteen: Building a Care Team. When living with dementia it is important to build a care team that can help you with specific aspects of life. Here is a list of people that others have informed me are helpful. Take a moment to think about what you would find helpful and who you might need on your care team. Know that this will be different for everyone. Members of this care team can be for the individual with the diagnosis and/or the family.

1. Family, Friends, Community members that you can count on for being there for you and your loved ones socially, emotionally, spiritually.

2. Neurologist

3. Geriatrician

4. Palliative Care Doctor

5. Elder Law Lawyer

6. Nurse Practitioners

7. Physician Assistant

8. Local Organizations

9. Artists/Teaching Artists

10. Counselors/Creative Arts Therapists

11. Spiritual Director

Day Nineteen: Artists, Creative Arts Therapists, and the Arts. The thread woven through all of dementia care is the arts and the artists at work. These artists may be teaching artists, art education students, professional or amateur artists, creative arts therapists. All of them play a role individually and collectively in offering a quality of life and life enrichment to those with dementia and their care partners. Then there is the art itself, making the art, viewing the art. Research exists proving the importance and impact of art and health, art and dementia. As always this is good and needed, and must continue, but not everything in dementia care should be medicalized, researched, and analyzed. Sometimes you need to be an academic, and sometimes you just need to create, experience, feel. That is the arts.

Day Twenty: TimeSlips. My favorite type of story prompt when using TimeSlips happens to be impressionistic art. There is movement, a story to be told by following the brush strokes. It opens the world. We are no longer limited to creating a story but allowed to have an art history lesson as well, leading further to the creation of the individual’s own art. There are endless ways to use the TimeSlips method. Every time I facilitate a story with a different group or individual I test the waters, see what interests them and pursue that spark. If you have not looked into this process, or have gone through the training yourself, I highly encourage you to do so.

Day Twenty-One: World Alzheimer’s Day.

Day Twenty-Two: Alzheimer’s Poetry Project.

Day Twenty-Three: Individuals with Dementia. People like Kate Swaffer, Norm McNamara, Wendy Mitchell, and anyone else that has dementia and are sharing their story, helping those of us without the diagnosis better understand, improving our understanding how and where they need us. These individuals are the best resource we have. And it is not just those in the spotlight, but anyone and everyone we encounter with dementia.

Day Twenty-Four: This page, Bonae Memoriae. I hope that I may be a resource for you as well, be it through coming into your home or community to facilitate programs, lead a training session, lead a memory café, help you develop programs that you can lead, or simply act as a sounding board. I am here.

Day Twenty-Five: Recognizing the difference between curing dementia, and improving the quality of life. Frequently when I share the work that I do I get a response of, “Does that prevent the decline of dementia?” There is the desire to make everything we do/the only thing we do in working with dementia a cure, cause a change in their decline, in their brain. This happens with everything from the therapies, to activity and life enrichment programs, and even the meals served in care communities. I am fascinated by neurology and the work that does impact the brain, BUT, we are leaving a large hole in helping those with dementia when we look purely at the medical and ignore the spirit and life of the individual. Find freedom to do something simply because there is joy in the time together, in the activity.

Day Twenty-Six: BrightStar Care. Companies such as BrightStar Care can help with care when your loved one is still living at home and go above and beyond basic medical care. In my experience with BrightStar, I have come to find they care deeply about becoming relational with those they care for and the individual’s family. When selecting care providers, it is important that you find one that you are comfortable with and trust.

Day Twenty-Seven: The Caregiver Prep. I came across this page today and what stood out to me first was that it is not a doom and gloom only list of tips. It is clear, a little hopeful, and I believe to be very helpful. Take a look.

Day Twenty-Eight: Selecting a Care Community. When it comes to selecting an Assisted Living or Nursing Home once living at home is no longer the best place there are many things to consider, from cost to type of care. This list and guide have been compiled by the Alzheimer’s Association.

Day Twenty-Nine: Telling children about a dementia diagnosis. Out of the UK comes this guide for how to tell your children about a loved one’s diagnosis of dementia.

Day Thirty: Aging in Place/Universal Design. When staying in your home, deciding that in-home care is the best decision for you or your loved one with dementia, modifications to your home may be a good idea or even needed. This is a process you may start at any time regardless of age or diagnosis and is something you might want to talk to your contractor, remodeler about if you are in the process of building a home or remodeling your existing home about it. I highly recommend having a Certified Aging in Place Specialist (CAPS) or Universal Design Certified Professional (UDCP) work with you as your designer and/or remodeler. Hiring a CAPS/UDCP to help you with your remodel will ensure you that they will have up to date information on the appliances, door widths, tub and shower options, grab bar information, color and lighting ideas, and so much more, to make maneuvering around the home easier and safer. If you are in the Appleton area, Distinctive Renovations might be a company to consider. They are members of NARI (National Association of the Remodeling Industry), between the two owners Gary and Susan you have talented designers who are, between the two of them, both CAPS (Gary) and UDCP (Susan). Distinctive Renovations is also the only Purple Angel Design and Remodel firm in North East Wisconsin.

A Starting List-What To Do?

Artful Approach, Dementia Compass, Personal Story of Dementia

Each time someone learns that I am a Dementia and Creative Engagement Specialist, someone will tell me their personal story of dementia. I will learn their grandma had Lewy Body Dementia, or of their mom having early-onset Alzheimer’s, or their grandfather has Vascular Dementia. Not once have I shared my work without someone sharing with me that they too live/lived with dementia. More and more of us will be impacted by this terminal disease yet our knowledge and the way we care for those with the diagnosis and their care partners are sometimes limiting. As many people there are with dementia, that is how many paths will be experienced. My personal experience with dementia, the bullet point version? My grandma was diagnosed with Vascular Dementia in July of 2005. She lived with the diagnosis of dementia for 6 and a half years. Those years were graced with an excellent doctor, and good care at the nursing home she lived starting in 2008 until her death in 2012. She had a handful of family members that visited her regularly and had a care plan that helped her sustain the best quality of life possible.  This is not always the case.

After sharing with each other our experiences of living with dementia I am often asked what steps should they have taken, what steps should they take now to help improve their lives and the lives of their loved one with dementia? It is next to impossible to come up with a universal list, but regardless of what type of dementia your loved one has, and where they are in the progression of the disease, this list might be a good starting point.

1. Love them as you always have. Caring for them as another human being. Visit them, maybe even with a cup of ice cream!

2. Have patience with them, and yourself, as the disease progresses knowing that the person they are today may not have been the person they were yesterday, or 10 years ago, the person they will be tomorrow. It can be difficult but live in the moment, finding a balance between who they are now, and who they were. Cherish the moments when they are having good days. If they are struggling to find a word, or cannot remember something, don’t rush the conversation, redirecting if needed.  And understand that everything they do, from trying to help someone, to the words they speak, to the yelling is a form of communication.

3. Find a really good doctor if you can! (If you want to become a doctor, or are in school now to become a doctor PLEASE consider going into Geriatrics! Or at a minimum study and work to understand dementia.)

4. Find a support group! These can be in-person groups or an online community.

5. If they are a person a faith, work to make sure that their faith is still being practiced. Pray with them! Take them to Mass/service.

6. Learn what makes each form of dementia unique, learn about what medications, care plans, and support work best for the specific type of dementia your loved one has, and then keep learning.

7. Encourage the places of business you visit to become Purple Angels.

8. Know that dementia does take away, but it also gives. It gives you time to spend with the one you care about in a new way. It allows you to engage with them creativity, to record their story. Don’t allow what they might no longer be able to do, to prevent you from spending time with them, engaging with them in ways that are creative, educational, social, and new.

9. Take care of yourself. Self-care is a trendy thing right now, that doesn’t mean you should fluff it off as you roll your eyes. Take time to mourn the person they once were, and find ways to breathe, find joy in your life, and work through the difficult times. Seeking support when needed, and know that dementia is an improv show. We are all taking what each moment is giving us, and then moving it forward the best we can.

10. Respect them. Don’t yell at them, Don’t ignore them. Even when it is difficult, still visit them, treating them as you would like to be treated.



New Training Programs Offered!

Artful Approach, Dementia Compass, Understanding Dementia, What Is Dementia

I am pleased to announce that I have developed two new training programs that I am introducing this summer. In addition to Understanding Dementia, Facilitation of Teepa Snow’s GEMS, and Dementia at Work, I now will offer, Engage with Dementia, and Young Ambassadors: Dementia Training for School Age Children. Below is a rundown of each training program. If you are interested in offering any of these for your company, organization, school, church, or even your family please feel free to contact me via the Contact page on this website, or email me at

Understanding Dementia: This 45-60 minute training covers the basics of dementia, going over different forms of dementia, current statistics, briefly looking at the cost of dementia, and basic ways to work with individuals with dementia. A resources guide is provided upon completion of the training that will lead you to community and national resources. The training is fitting for any setting or group and is a classroom training. The cost of the training is $75 or Free if you are becoming a Purple Angel, or are a family.

Working with Dementia: This 45-minute training covers the specifics of how to navigate dementia relationships in the workplace, be it through clients, customers, consumers, and visitors. This training is fitting for insurance companies, the remodeling and construction industry, those in the service industry, restaurants, museums, and other places of business, and is a classroom and experiential training. The cost of the training is $50 or Free if you are becoming a Purple Angel, or are a family.

Engage with Dementia: This 2 Session, 60 minute each training covers how to become engaged creatively with dementia, how do we develop meaningful programming for those with dementia, applying creative engagement to any role be it a nurse, activities/Life Enrichment specialist, or CEO, and understanding the balance between extroverted and introverted programming and communication. This training is designed specifically for Care Communities such as Hospitals, Nursing Homes, In-Home Care providers, Assisted Living communities, as well as for museums and those seeking development of intergenerational programming. Upon completion of the training a resource guide is provided along with ongoing mentorship and consulting, and one program developed specially for the site. This is a 2 part classroom and experiential training. The cost of this training is $100.

Young Ambassadors: Dementia Training for School Age Children: This 45-minute training covers the basics of dementia presented in a way suitable for school age children. This training is designed for schools, and children’s programming organizations such as summer camps and after school care and is an experiential training. The cost of this training is $30 or Free for families.