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. https://www.purpleangel-global.com

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, https://www.spreaker.com/…/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. http://www.caringkindnyc.org/connect2culture/

http://fryemuseum.org/creative_aging/

http://www.alz.org/sewi/in_my_community_19695.asp

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. https://www.caring.com/articles/tips-visiting-someone-dementia?utm_campaign=fanpage&utm_medium=social&utm_source=facebook

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. http://www.timeslips.org

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.

https://whichmeamitoday.wordpress.com https://kateswaffer.com

https://www.purpleangel-global.com/about.html

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.

What Dementia Can Not Destroy

Personal Story of Dementia

Every Sunday I scroll through the obituary pages. I hold my breath as I follow the list and pray I don’t recognize a name. I breathe a sigh of relief when I get to the bottom and I didn’t recognize a name, or, like what has happened a few Sundays in a row, my heart sinks when I see the name of someone I have worked with in the past or present. “It is strange that a 28-year-old looks at that page of the newspaper,” some have told me. This weekly ritual is an outcome of my job. Some call it an occupational hazard, and if so one I will gladly take on. I don’t think of it that way. It is part of living, of coming to care about another individual. Every day I am asked to become relational with those whom I work for in the memory care, assisted living, and nursing home communities. In becoming relational we teeter on that balance between professional and personal relationships. I come to care about them, and they come to care about me. I become a sort of niece, granddaughter, even sister to them, and they become additional grandparents, uncles, and aunts.

The individuals whose names I saw in recent weeks were especially impactful on my life. They made me smile and were sources of great learning. The first person caused me to ask questions, to think about how I care for someone. My eyes were opened wider because of the stories she shared with anyone who would listen. I gained insight into what it was like to grow up in Nazi Germany and live through the horror of that time, to move to the United States post-WWII as a German. I learned what it was like to be a university professor and a great scholar in the 20th century. The second individual was someone whom I did not spend as much time with, yet taught me to laugh a little more freely again. We connected through a similar faith, and love of family. He reminded me what it was like to leap, and the freedom that came from doing so. Many of the stories and moments shared will remain between the two of us.

Reflecting upon these stories and moments shared, I am again aware of what dementia can not destroy. I am reminded of the lessons these individuals still could teach, and hope they could still inspire. All too often I see people brush off our elders, not bothering to take time to hear their stories that help make the listener a better person, our society a better place to live. We have so much to learn from our elders regardless of the journey their life has taken, regardless of the diagnosis in their charts, and how they appear to be sitting in the chair across the room. A better future comes from learning what our elders lived, what they learned, and what they wish to pass on. Take a moment, sit, listen, and long after they are gone, still hold in your heart their spirit. It will make you a better individual, a better care partner. I can guarantee you that much.