The True Experts

If I am honest, everything I know about dementia I know from the science/medical perspective. If I am honest, everything I know about dementia is an interpretation of what has been shared with me by someone who has dementia. If I am honest, everything I know about dementia I know from what I wish I knew when my grandmother was first diagnosed.
If we are honest, we only know second-hand stories of dementia. That does not diminish the medical understanding, the continued research, or our caregiver experience, but it reminds us that we must listen to those with dementia; to hear their wishes, their needs, their sorrows, and their joys. Each time I read a blog post, hear a podcast or watch someone with dementia give a presentation, I am humbled by their stories. I am reminded that while I may be knowledgeable, and seen as an “expert” they are the true experts. They are the individuals that call us out when we waver and teach us each day what living with dementia really means. This month I have focused on sharing with others the programs and resources I follow, facilitate, and use, but starting on Monday I want to also introduce to you individuals with dementia, those in the public eye. They are the experts that make us all better care partners, better family members, community members, and better individuals. May we all learn from them, to see and hear them. To make sure that they are the always included in our work.

World Alzheimer’s Month Recap

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.

New Training Programs Offered!

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.

A Poem by Norman

In preparation for tomorrow’s Lewy Body post, I want to share with you a poem that was written by Norman McNamara who what diagnosed with Lewy Body (Bodies) Dementia at age 50. He is, in addition to the founder of the Purple Angel program, the author of the book, The Lewy Body Soldier

Please do not Mock Us

Do not pity me because i have dementia,
Nor must you mock me because i have lived so long with it,
You would always choose to live well over not doing so, wouldn’t you ?
So why cant i do the same?
Thing is, i have no choice in the matter
I have no idea how i will be on a daily basis,
I cannot make plans for the future
The uncertainty of what the next day brings is unrelenting,
I dont know why i have lived so long with this illness
I dont know why i am still able to do what i do,
But i do the best i can do,, wouldn’t YOU ?
i am sure you would do the same,
My time with my family and friends is precious,
Yes the fear of not knowing hangs over me,
And yet, i carry on, best i can, brave face and all that,
Though I weep when my friends pass away,
Especially those who were diagnosed after me,
The guilt is all consuming and yet, and yet
Here i am, there are you, not that much we can do
Enjoy your lives in the knowledge you are special,
No need to mock me or others who live their lives under this dementia cloud,
We are no different than you, maybe just a little more grateful from day to day

Norrms McNamara

Purple Angels at Work

I am currently back in Wisconsin, and this weekend while making a trip to Piggly Wiggly, I stood in the checkout line behind a man with dementia. As he was getting ready to pay for his watermelon and pineapple, he struggled to make the correct change and with a tone of embarrassment in his voice,  stated he forgot how to count out his change. The cashier moved closer to him and helped make the correct change needed in a way that I wish we all could learn from. She was patient, transparent, she did not try to demean him, or roll her eyes while he stared at the change in his hand and struggled to figure it out. This Piggly Wiggly location is a Purple Angel. This means that their employees have gone through a training in working with dementia as it relates to a grocery store, and it was beautifully at work that afternoon. We cannot always count on our employees and the employees of the establishments we visit to know instinctively how to serve those with dementia. This woman may have known what to do, and how to engage with this person with dementia without training, but we cannot count on that.  This is why having an organization like the Purple Angel can drastically change our community. It may take some effort, but it is minimal compared to the impact our collective dedication will make. I walked out of that store with my Pellegrino in hand filled with great joy when reflecting the work the PA Ambassadors are doing across the globe. The care this woman took gave me hope that someday the stigma of dementia will be erased, and the level of care for those with dementia and their caregivers will far surpass what it is today. Please, if you own a company, organization, or place of business, consider becoming a Purple Angel. If you work for one of these places, share the program with your boss and invite them to make your workplace a Purple Angel. And if you think you would like to become an Ambassador take the time to discern the role. As always, thank you to those who already have become Purple Angels! Your dedication does make a difference.

If you would like to learn more about this program go to the Purple Angel tab in the top menu bar to read more and to be directed to the Global Purple Angel website. If you have any questions feel free to comment or contact me.