1994: President Ronald Reagan penned his now famous letter to the American public announcing that he was in the early stages of Alzheimer’s disease. The same year, my dad, at 81, had just been diagnosed with “memory problems”; my son Mike was a sophomore in high school; and I was 3 years into a new marriage and at the top of my Human Resources career.  Three years later my husband Richard, at 57, was diagnosed with Mild Cognitive Impairment. Dad died in 2001 from what I later learned was vascular dementia and Richard in 2012 from Alzheimer’s.

What I didn’t know in 1994 and even in 1997 was that my life, like theirs, had been forever changed. Did the word “advocacy” enter my mind? Of course not. Neither was “caregiver” a part of my vocabulary. While I quickly became both for my dad and my husband, in those early years I had little understanding of the demands, the challenges and the ravages of dementia. I was unaware of the physical, emotional, and financial damage it would wield.

September marks World Alzheimer’s Month, the international campaign launched by Alzheimer’s Disease International (ADI) to raise awareness and promote a greater understanding of dementia. Every 3 seconds someone in the world develops dementia; every 65 seconds in the United States. The number of people living with dementia around the world is over 50 million. In the United States over 5.8 million individuals are living with dementia and being cared for by 16 million unpaid family caregivers providing an estimated 18.5 billion hours of care each year. While the statistics are staggering, according to ADI, two out of three people globally believe there is little or no understanding of dementia in their countries. The theme of this year’s campaign,  “Let’s Talk About Dementia,” hopes to change that.

I know there are people who will take exception to the use of my harsh description but dementia is a harsh disease that continues to outmaneuver us. 25 years after my dad’s diagnosis, I’m still striving to make my voice heard on behalf of families like mine who spent too many gut-wrenching years in the trenches with dementia. In 2009 my brother urged me to seek additional help and move my husband to assisted living, reminding me that without help, dementia could take two lives and not just one. While well-intentioned, we both were terribly naïve.For in fact, it has. 

For the past 10 years I’ve used my time, my voice and my resources to pull others into the movement to support families facing what I once faced and to help create a movement big enough to change the trajectory of this disease. 

Sure we can live well with Alzheimer’s or any other tragic event because we are people of faith and inherent in that is the desire to leave things just a bit better— really . . .exponentially better—than the circumstances we have found ourselves in. That’s what motivated me to become a founding member of the ClergyAgainstAlzheimer’s Network and, later, the Faith United Against Alzheimer’s Coalition:multi-faith, diverse communities of clergy, other faith leaders, laity, and faith organizations sharing this mission of care and cure.

So how do we translate our experience as caregivers to effective action because I’m sure you believe as I do, that a “like” on FaceBook, Twitter, or Instagram, is not action. Awareness is a good beginning, and empathy is essential, but they need to be coupled with action. How do we talk about dementia in such a way that we grow our movement and multiply our voices? How do we unify all the valid yet competing interests and achieve what we all long for—better care, prevention, and one day, a cure for Alzheimer’s and related dementias?

Faith communities are uniquely positioned to do just that: to welcome those living with dementia and their families, to enable worship, support care partners, educate about dementia, promote brain health, and advocate for local and national policies and research funding.

Let me share briefly what I hope are powerful and far reaching resources—conversation starters— that the Clergy Network and Faith Coalition have created. Our first book, Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers, published in 2014, is a collection of personal reflections, stories, songs, prayers, scriptures, and encouraging words written by caregivers of multiple faith traditions to comfort and sustain other caregivers during this most challenging time. Is there someone in your congregation—or now, painfully absent from your congregation—who could use this book?

Dementia-friendly Worship: A Multifaith Handbook for Chaplains, Clergy and Faith Communities, published in June of this year, is also a first of its kind book with 45 different authors representing diverse faith traditions, including Christianity, Islam, Judaism, Sikhism, Buddhism and Native American. These experienced and compassionate authors provide an understanding of the cognitive, communicative and physical abilities of people with dementia and share what chaplains, clergy and laypersons can do to engage them through worship and other spiritual practices. Included are the voices of individuals living with and at risk for dementia.There are also three chapters that go beyond worship to creating dementia-friendly faith communities. If your pastor, priest, rabbi or imam is acquainted with dementia but uncertain as to how to offer support, this would be an excellent gift.

But what about pastors, priests, and rabbis who have yet to be impacted and who might benefit from an abbreviated introduction? That’s where Stolen Memories: An Alzheimer’s Stole Ministry & Tallit Initiative comes in. It’s a book with pictures of about 25 clergy members and their short reflections on their experience with Alzheimer’s and other dementias. It’s clergy talking to clergy.

Grace does not come from us but through us so my purpose in writing today is to ask each of you what or who it was that called you to this movement and, more importantly, what can you do to move us from awareness to action? If you are a member of a faith community and want to broach this subject with others, you now have the resources to do so. So, please, while not the most pleasant or welcome of topics, “Let’s Talk About Dementia.”

Supervising a building project was not on my to-do list. But I did want to see that dream of a pergola with a comfortable swing materialize in my backyard. The deck was rotting and I had stepped through decaying boards more than once. So the project began and I stayed home to be on hand in case any problems arose. Watching the progress through the window, I took the time to work on my online dementia advocacy activities.

An email came explaining several mini-grants were available from the Central Alabama Aging Consortium in Montgomery to expand dementia friendly communities. The idea was to foster increased awareness in Alabama of the growing dementia incidence and initiate and conduct sustainable programs that offer information to assist caregivers and people living with dementia. The Dementia Friendly concept is slowly growing in the United States and I was excited that the movement had reached our state. I forwarded the information to my friend, AL Cares Coordinator, Della Sanchez at the Area Agency on Aging. I knew she was busy already but this was another dream that wouldn’t leave me alone. I thought, “If I could just find someone who wanted it as bad as I did, maybe we could work together.” She sent back the message suggesting, “You do it.” I thought, “Okay, maybe I should try.” But I’ve never written a grant. Where do I go for help? I began researching the Internet for ideas and talking to people who had successfully written and won grants.

With the construction work happening outside, I began my own construction on the computer. In my seat at the kitchen table, I built a plan to promote dementia friendly practices in faith communities. After all, the church seemed the ideal place to start. What better place could a person go to find support, encouragement, and understanding when facing life with dementia? My proposal was to educate church staff on how to recognize dementia, caregiver stress, be able to create an environment that was welcoming and inclusive and have helpful resources on hand. Culminating these efforts would be to offer a Memory Café, providing a safe and understanding social event for people with dementia and their care partner.

Two days before the grant submission deadline, I sent the draft to Mrs. Sanchez at the Area Agency on Aging. She forwarded it to the director of the AAA, Julie McGee who responded back with her own proposal. She advised that I would not be able to qualify for the grant as an individual. She had encouraged and enabled my efforts in the past so I wasn’t completely shocked at what came next. In her gracious, supportive way, this powerful woman offered to submit the grant application, by making a few small changes, thereby adding the weight of her position and the structure of her office. I began to think we had a real chance at qualifying for this grant.

One might wonder why would I go to so much effort to talk about dementia. The answer is simple. Because dementia has a way of changing the lives of everyone it touches. As a caregiver for my mom and later my aunt, who both lived the last years of their lives with dementia, a passion for helping others navigate that journey grew into advocacy and action. The valuable lessons I learned along the way were too precious to keep to myself. Although caregiving requires strength, courage, and perseverance, we found a way to keep hope alive. We discovered that our journey was one of faith and love. This took time to develop but the further along we went, the experience taught us to anticipate change and face each challenge with confidence. We found joy in helping others, giving us purpose for our journey. We walked together to the very end of both my mom’s and my aunt’s life and parted at heaven’s gates. I determined to take what we had learned and continue to advocate for those who were following behind.

The submission deadline was met. We waited. The results were two weeks away. While shopping in Costco the phone call came that we’d been waiting for. Moving over to a quiet corner of the store, I listened to the results. The voice said she wanted me to be the first to know. We had gotten the grant. In the time it took to hear the good news and wipe away my tears, my life changed.

Reality set in. Now I was responsible for following through with this homespun plan. The agreement was clear from the beginning. The Area Agency on Aging would submit the grant, but I would do the work. Based on the Dementia Friendly America model, this was a grassroots operation and I would need help. Fellow advocate, Jerry Horn had already lent his graphic art talents to the cause so we began to talk about creating a brochure. I consulted with Mrs. McGee’s wise administrative assistant, Nancy Bledsoe. This was an unexpected relationship that became my lifeline. She helped me with everything. She advised how I should keep track of my activity and shared her organizational methods. We worked together on spending the budget – what to buy and the channels that it would take to make purchases. She coached me on how to find presentation opportunities. This took several months to carry out. Meanwhile, I began writing a PowerPoint Presentation (PPX) to convey our message and compiling folders to handout that would not only inspire and educate our faith communities but also offer local resources.

Finally, I was ready to start finding churches that would be interested. With brochure in hand and in PDF ready to share, I made phone calls. I sent out Facebook invitations to alert the dementia community of this opportunity. Nothing was forthcoming. This became a little worrisome, as we had proposed that 10 churches would invite me to talk about becoming dementia friendly by the end of September. And August was almost here. I began to look for any opportunity. My first approach was to ask for help and consultation with a church administrator. We met and after spending two hours talking, he asked for a copy of my folder (at this point it was a rough draft). He made his own copy and I left. I documented the meeting and counted it as number 1.

My next opportunity came by way of the Alzheimer’s Association to speak to our local National Association of Retired Federal Employees (NARFE) group that wanted to know more about the association. As the Alzheimer’s Association Ambassador for District 01, I was happy to oblige. After all, NARFE collectively donates millions of dollars to the Alzheimer’s Association each year and I had a projector, screen, and a rolling bag to carry supplies. So I created a new PPX to talk about what they wanted to hear and wove in what else I was doing. I handed out grant-funded materials and gave out several books.

The next event took place at Westminster Village, a retirement community that offers all levels of care. Upon my arrival posters lined the halls with my photo announcing the event. A tech team helped set up, as people filed in, 41 in all. Several friends from the next county showed up. My ambassador team arrived and helped wherever needed. The smiles and interest on the audience’s faces were encouraging.

By now, my calendar had several commitments secured – two being at my Alma Mata, the University of South Alabama. Going from being a voiceless caregiver to speaking at an OT/PT Conference is a surreal experience. Then I spoke to a Therapeutic Recreation class where, as a student years ago, the inspiration to help the aging population began. And best of all, my mentor, Cathy O’Keefe was present to teach the first part of the class. The students seemed engaged and interested when shown the PPX about activities and life in skilled care that came from my personal experiences.

The next events took place in lovely church facilities: one after a luncheon and another on a Sunday afternoon. Refreshments were set out by the church helpers and my husband was available to run the PPX from the sound booth. My friend, Elisabeth Greene directed the people as they arrived, making sure they signed in and got the proper handouts. For 1 1/2 hours, I talked about dementia, how to prepare, and how to continue an emotional connection with loved ones when living with dementia. We had a drawing for books and some activity ideas on display to share.

Occasionally, I have looked at my ambitious calendar and wonder if I am able to do what I’ve committed to. Then I remember the sight of my back bedroom, which is laden with books, handouts, a printer, ink refills, paper, etc. Folders are stacked up in boxes, along with one box devoted to supplies for the Memory Cafe, which we successfully carried out near the end of the grant period. The happy occasion was held at the Mobile Museum of Art. We had music therapy led by Sonya Atwood followed by art instruction from Elizabet Elliot and Angela King. Refreshments were provided by the AARP. There were 23 people in attendance. Many are ready to return to our next Memory Cafe in November.

By the end of the six-month grant period, we reached and exceeded our goals and managed to speak in front of 173 people altogether. More commitments are on the calendar and I continue to say yes to every opportunity.

The dementia friendly movement in Mobile is driven by the same faith and resolve that sustained us while care partnering. If you have a passion to help create a culture where people with dementia can feel respected, supported and included in everyday community life, now is the time to act. The Central Alabama Aging Consortium is now offering Dementia Friendly Communities Expansion Mini-Grants to people who are ready to change lives: their own and those of people living with or caring for people with dementia. Contact Stephanie Holmes for further information at Stephanie.Holmes@adss.alabama.gmail.com or visit http://centralalabamaaging.org/category/calendar/and learn how to apply.

With our grant completed and more being offered, let’s continue to build dementia friendly communities, offering hope to the thousands who are impacted daily in Alabama.  Catch the vision. We all have a part to play in order to reach all areas of the community. Won’t you join us?

 

Beth Reinert, October 2017Dementia Friendly Project Manager

Dementia Friendly Project Manager

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