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CREATING DEMENTIA FRIENDLY FAITH COMMUNITIES

Fostering spiritual connection and meaningful engagement for those living with dementia and support for families, as we work together to stop Alzheimer’s disease.

Know your congregation members
Keep track and keep in touch. Taking note of attendance is a critically important basic step in developing connections to families who may be facing dementia.

Educate congregation members and your community about dementia
Education empowers and prepares community members to serve the needs of those living with dementia and their care partners, reduces stigma and increases awareness about cognitive health.
• Invite a person living with dementia to speak about his or her personal experience.
• Speak and share materials about the Alzheimer’s crisis, dementia, brain health and clinical trial opportunities.
• Become a Dementia Friend at www.dementiafriendsusa.org.

Create a safe and friendly environment
• Assess congregation facilities for safety and accessibility for people living with dementia.
• Display signs clearly identifying areas, such as restrooms.
• Accept and be sensitive to behaviors that people with dementia may display, such as talking, calling out, or walking about at inappropriate times. Respond flexibly to encourage people to remain involved or help them to another area if necessary.

Invite members facing dementia to congregational events
• Make a special effort to invite individuals living with dementia and their families to participate in congregational events, such as study groups, concerts, plays, outings and preschool programs.
• Greet them warmly and participate with them.
• Offer a volunteer companion for a member with dementia when extra support is needed.
• Wear name tags.
• Provide a quiet area where the person with dementia
may go during the service as needed.
• Adapt worship services to be welcoming and supportive of people living with dementia. For guidance on designing and delivering services refer to Dementia-Friendly Worship: A Multifaith Handbook for Chaplains, Clergy and Faith Communities.
• Arrange worship at home or in care facilities if a member can no longer attend in person.

Encourage members with dementia to participate within your faith community
Enable members living with dementia to continue engaging in roles allowing them to serve God and others. As their dementia progresses, consider new ways to engage and involve them in the life or ministry of your community.

Encourage participation in community service projects or faith-based opportunities
Invite people living with dementia and their caregivers to join in service projects and faith-based opportunities for as long as possible. Feeling a sense of purpose and the satisfaction of using God-given skills to help others is invaluable.

Assess existing resources and how to share them with people living with dementia
• A youth group interested in service projects
• Members willing to provide meals for members in need
• An adult group or Sunday school class that could be empowered to provide care
• Prayer groups enlisted to pray for people living with dementia and their caregivers
• Service groups and service days dedicated to practical projects
• Singing groups or bands willing to perform
• Church van and driver to take members to church or appointments

Offer respite care to alleviate care partner stress and isolation

Respite care for loved ones and care partners of people experiencing dementia offers a short period of rest or relief. While caregivers have a break, congregation volunteers can lead art, physical exercise, music, games, a meal and other activities for family members with dementia to enjoy.

Host a caregiver support group

Organize or host a support group for caregivers using Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers and its companion Leader’s Guide by ClergyAgainstAlzheimer’s.

Pray
Never underestimate the power of ongoing prayer. Encourage your faith and lay leaders, and congregants to remember in prayer those who travel the path of memory loss. Consider a daily or weekly prayer chain and check-in program for families and caregivers of those who have dementia.

Encourage community members to adopt healthy lifestyles

Facilitate a physical, emotional and spiritual wellness program in support of holistic care of body, mind and spirit. People living with dementia can participate with all members in living life well through exercise, nutrition and social engagement.

Encourage members to volunteer for clinical trials
Clinical trials are the key to curing Alzheimer’s, but they need more volunteers. Participants in a clinical trial benefit from the knowledge of the medical team running it, and for some, the experimental treatment could improve their
health. Visit www.usagainstalzheimers.org/research.

Collect and lend resources
Compose a list of community resources to share – doctors, memory care facilities, adult day care centers, senior advocacy groups — and collect good, used adaptive medical equipment which families can borrow, as needed.

Educate and assist families in completing legal and financial planning
Offer a seminar for the congregation and local community on legal and financial planning focused on the difficult decisions which may surface following a dementia diagnosis.

Offer the joy of music through choirs and bands
Emerging research underscores the validity of music programs for people with dementia. Consider developing choirs and bands tailored for people with dementia and their caregivers.

Host a Memory Café

A Memory Café is a safe, supportive gathering for caregivers and those with cognitive impairment to engage in fun and engaging activities – enjoying the company of others as they interact, share concerns, celebrate, cry and find
friendship.

Plan an initiative to sustain support
If your congregation is interested in better serving people living with dementia and their caregivers over the long term, consider forming a small group to examine options and resources. Create a plan and methodically work toward coordination. Collaborate with other interested faith communities and regional non-profit organizations, including Dementia Friendly America.

Join the Stole Ministry and Tallit Initiative
Form a sewing group to create Alzheimer’s stoles or tallitot for clergy members to wear to increase awareness, prompt action and promote dementia friendly faith communities. Project overview, step by step instructions and photos are
included in Stolen Memories: An Alzheimer’s Stole Ministry & Tallit Initiative.

Get involved in advocacy for an Alzheimer’s cure

Encourage members to join Faith United Against Alzheimer’s – a coalition of UsAgainstAlzheimer’s dedicated to mobilizing faith communities in the fight against Alzheimer’s – to take action on critical topics, such as Alzheimer’s research funding, brain health and caregiver support.

Resources for Congregations:

1. ClergyAgainstAlzheimer’s Network, Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers. CreateSpace, 2014.
Seasons of Caring offers the gifts of hope, encouragement, compassion and empathy to those on the difficult journey of caring for loved ones with Alzheimer’s disease and other dementias.

The book is organized around themes of seasonal transition, with each of the four seasons paralleling the various stages of life. The original writings by seventy-two authors representing a great diversity of spiritual traditions range from thoughtful meditations to poignant personal stories, moving poems and meaningful songs.

Each meditation begins with an inspirational quote and ends with a prayer or words of encouragement. Eight of these authors are local.

2. ClergyAgainstAlzheimer’s Network and Richard L. Morgan, Ph.D., Leader’s Guide for Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers. Create Space, 2015.

The Leader’s Guide is a companion volume to be used with Seasons of Caring by facilitators of support groups. Nationally renowned author, retired pastor, and founding member of ClergyAgainstAlzheimer’s, Dr. Richard L. Morgan has drawn upon over 60 years of pastoral care for those with Alzheimer's, including his service as a hospice chaplain and a longtime facilitator for Alzheimer’s support groups to write the Leader’s Guide to help other facilitators in
their groups. The Leader’s Guide takes the original themes and metaphors of Seasons of Caring and delves deeper into caregiver concerns and stories, such as communicating with a loved one, dealing with guilt and forgiving oneself, using art and music to connect with a loved one and maintain relationship, and facing the difficult issues of death and grieving.

3. Daniel C. Potts, M.D. and Ellen Woodward Potts, A Pocket Guide for the Alzheimer’s Caregiver. Dementia Dynamics LLC, 2011.

This book is the place to turn for initial information and perspective on Alzheimer’s disease, and to return for practical advice as problems arise. Dr. Potts is a noted neurologist, author, educator, and champion of those with Alzheimer's and their caregivers. His wife Ellen has over 25 years experience in healthcare management and teaches at the University of Alabama.

Together they have had 8 close relatives with dementia for whom their immediate families provided care. And, together Danny and Ellen offer clear, concise, practical, and most importantly, compassionate information and advice to help care for and improve the lives of patients with Alzheimer’s and those who care for them. Their book is divided into two sections – the first with discussions of common issues and problems, and the second with an alphabetical quick reference of problems and listed responses. This is a perfect format for the often weary and distraught caregiver who has many concerns and little time. Danny and Ellen live in Tuscaloosa and are available as speakers or consultants.

4. Jane Marie Thibault, Ph.D. and Richard L. Morgan, Ph.D., No Act of Love Is Ever Wasted: The Spirituality of Caring for Persons with Dementia. Upper Room, 2009. Relying on their many years of experience in the areas of aging, dementia and spirituality, authors Jane Thibault, a clinical gerontologist, and Richard Morgan, a retired Presbyterian minister, offer this book to provide a fresh, hopeful model of dealing with life and death in the realm of Alzheimer’s and other forms of dementia. The authors suggest that caregivers have two basic needs: affirmation that caregiving is not in vain and reassurance that the lives of those for whom they care are not being lived in vain. They further state that care receivers need more than medical attention; they need tender care, involvement in the community, and a sense of connection with a loving God. Their perspective that caregiving is an extension of spiritual life will aid families and professionals to look beyond day-to-day routines and chores and accept their role as an opportunity to serve the total person in body, mind, and spirit. In addition to
offering practical ways to help, this book serves as a reminder that every act of love brings positive transformation to the recipient, to the giver, and to the world.

No Act of Love Is Ever
Wasted is an excellent resource for individuals caring for loved ones as well as for counselors, support group leaders, pastors, and other professionals.

5. Kathy Fogg Berry, When Words Fail: Practical Ministry to People with Dementia and Their Caregivers (DVD & Study Guide). FaithHappenings Publishers, 2016. More than 5.4 million Americans are living with Alzheimer’s disease today and more than 15 million Americans provide unpaid care for those with Alzheimer’s and other dementias. For faith communities, this represents a crucial opportunity for ministry and practical care – one that many aren’t adequately prepared for.

All too often, as memories and abilities fade and the capacity to communicate weakens, those with dementia and their caregivers find themselves neglected or forgotten by the larger community. Despite good intentions, when words begin to fail for people with dementia, words also fail for those around them, who don’t know what to say or what to do. But, like all of us, those suffering from dementia still need human connection and spiritual nourishment, and their caregivers need our understanding and support.

Rev. Kathy Fogg Berry is eminently qualified to address the many challenges presented by this disease and to offer practical suggestions, gleaned from years of ministering to people in various stages of dementia, for ways to meet the emotional, physical, social and spiritual needs of those impacted. When Words Fail will equip those in ministry to reach out to people living with dementia and offer person-centered spiritual care – ministering to the mind, body, and soul.

This DVD is filled with teaching, demonstrations of effective ministry, and inspiring ways to bring joy and spiritual nourishment even after words have failed. These tools offer a better understanding of how to visit and support not only people living with dementia but their caregivers, too.

6. Don Wendorf, Psy.D., Caregiver Carols: a Musical, Emotional Memoir. CreateSpace, May 2014.

Through the stories of his own caregiving for his late wife with vascular dementia, retired psychologist Don Wendorf provides insights, ideas, and support for other caregivers and their emotional struggles. He writes primarily through song lyrics/rhyming verses, consistent with his belief in the power of music and other creative, expressive arts to inform, inspire, nurture, soothe, illuminate and connect with people living with dementia and their caregivers as well.
Selections are humorous, chatty, moving, educational and practical. He wants caregivers to know that their feelings are tough, but normal and manageable, and that they are not alone. Don lives in Birmingham and is available as a speaker/performer.

7. Marie Marley, Ph.D. and Daniel C. Potts, M.D., F.A.A.N., Finding Joy In Alzheimer’s: New Hope For Caregivers. CreateSpace, 2015.

With a Foreword by Maria Shriver, this groundbreaking volume will give caregivers hope in the midst of the darkness of Alzheimer’s and other dementias. The authors, who were caregivers themselves, provide many examples of how others can come to terms with their loved one’s condition and free themselves to experience joyous interactions. Part I covers a variety of issues, such as the authors’ belief that people with Alzheimer’s can still enjoy life, how to
overcome denial, five especially difficult situations, the role of grief on the journey to acceptance, and letting go of resentment through making peace with God. In

Part II the authors
provide 55 helpful tips for visiting people with Alzheimer’s. Part III consists of numerous short stories illustrating the authors’ joyous interactions with their loved ones. The stories will warm your heart and light your way along the path to achieving joy in what can be a most challenging journey.

8. Richard L. Morgan, Ph.D. and Daniel C. Potts, M.D., F.A.A.N., Treasure for
Alzheimer's: Reflecting on experiences with the art of Lester E. Potts, Jr. CreateSpace, 2015.

Despite the typical loss of memory and verbal skills in persons with Alzheimer’s disease or other dementias, Treasure for Alzheimer’s clearly shows that art often reaches below the conscious level of existence to a hidden depth of meaning stored within. Dr. Richard Morgan used the art of Lester E. Potts, Jr., painted in the throes of Alzheimer’s disease, to communicate and develop relationships with residents in a residential care facility who were similarly affected. This may well be the first time the art of a lay person with Alzheimer’s has been used therapeutically with people who have the same disease or related dementias. The amazing results show how connections and relationships were forged which formerly did not exist, and give hope to caregivers and others who seek to know the identities still deeply present inside each of us despite the loss of cognition.

9. Michael Rossato-Bennett, Alive Inside DVD, 2014.
This moving documentary follows social worker Dan Cohen, founder of the nonprofit organization Music & Memory, as he fights against a broken healthcare system to demonstrate musics remarkable ability to temporarily combat memory loss and restore a deep sense of self to those suffering from it.

Rossato-Bennett visits family members who have witnessed the miraculous effects of personalized music on their loved ones, especially in being able to express their feelings and connect with others. The DVD offers illuminating interviews with experts including renowned neurologist and best-selling author Oliver Sacks and musician Bobby McFerrin.

10. Cognitive Dynamics Foundation, Do You Know Me Now? DVD, 2015.
This powerful documentary explores relationship and personhood in people who have Alzheimer’s disease and other causes of dementia, and shows viewers ways to reach out and find the person inside the shell of memory loss.  This video takes a novel look at what it means to be a person with dementia who is still very much alive and possessing those traits upon which relationships may be built, even late into the disease.  The stories of some very special people and their loved ones who have found ways to connect through art and personal passions are shared — Cathie Borrie, Rita and Jim Houston, Lester Potts and his family. And there is a rare interview with Naomi Feil, the founder of Validation therapy, demonstrating how to touch, listen to, and mirror the actions of your family member or friend.

Do You Know Me Now? asserts that relationship that is deep and meaningful is still very much a possibility despite advancing cognitive loss.  This powerful video provides caregivers skills that will help them to better communicate with loved ones with dementia.  What caregivers learn will help make their loved ones’ lives better and their own lives easier. This video presents new ways to understand and new ways to help.

11. Rev. Dr. Cynthia Huling Hummel, Unmasking Alzheimer’s: The Memories Behind the Masks. lulu.com, 2017.
Cynthia Huling Hummel is a pastor, artist, and Alzheimer’s advocate who is living with Alzheimer’s. She is also a courageous woman, eager to de-stigmatize Alzheimer’s. In her newest book, UnMasking Alzheimer's: The Memories Behind the Masks, she shares photographs of thirty masks she created along with her reflections on the challenges and hopes of living well with an AD diagnosis. Her book gives a very realistic insight into what it’s like to
have dementia, without being depressing or terrifying. Her story is heartrending, but also filled with faith, joy, friendship, and purpose. In Unmasking Alzheimer’s, she illuminates the transformative power of the arts and encourages readers to look beyond the masks of cognitive impairment to reach and connect with the person who is still very much there.

12. The Balm in Gilead and the Sanders-Brown Center on Aging at the University of Kentucky, The Book of Alzheimer’s For African American congregations. lulu.com, 2017. The Book of Alzheimer’s is a resource guide for congregations serving African Americans who desire to help families and individuals cope with dementia, including Alzheimer’s. The burden of dementia is tremendous in African American communities. According to the Alzheimer’s Association, African Americans are two to three times more likely than whites to develop
dementia. Unfortunately, data suggests that African Americans entering the age of risk, age 65 and older, will more than double to 6.9 million over the next 30 years. The Book of Alzheimer’s is designed to share facts about this disease and ideas on how congregations can provide sensitive and appropriate support to individuals and families as they struggle through the process of this currently incurable disease.