When Words Fail:
Practical Ministry to People with Dementia and their Caregivers
“Dementia IS a spiritual issue. Regardless of your faith affiliation, it starts with a fear so deep it rocks you. And that is a spiritual experience in need of help!”
A generous, anonymous donor spoke these words as he decided to support this project. When Words Fail explores effective ministry to those with dementia, whose words are, indeed, failing. Learn how to communicate and offer the spiritual support so deeply needed by families experiencing dementia.
A brief look at why this resource is needed, emphasizing the very real call for church communities to enter into community with and care for people living with dementia diseases. This introduction lays out the method and approach of the book, underscoring its focus on providing practical tools to help readers minister to people with dementia in a holistic way.
Chapter 1: When Words Fail: Why is Help Needed?
Chapter 1 lays out the pressing need for spiritual care of dementia patients, underscoring the large numbers of people living with dementia today and highlighting the isolation that many such people feel. It introduces readers to some common ways dementia diseases might manifest in older members of one’s faith community—something that we can easily miss if we aren’t looking for it. This chapter also introduces the idea of a team approach, which calls upon many members of the church community—not just ministers or chaplains—to participate in meeting the many and diverse needs of congregants with dementia.
Chapter 2: Dementia: What is it?
Chapter 2 offers a general introduction to Alzheimer’s and other dementia diseases, avoiding technical jargon and instead focusing on the differences between various types and the kinds of symptoms that might manifest. By helping readers gain a general understanding of how dementia diseases progress in the brain, this chapter equips them to make sense of how people living with dementia might communicate, react, and respond.
Chapter 3: Obtaining a Diagnosis
Chapter 3 looks at the often challenging road to receiving a dementia disease diagnosis. Emphasizing the many different ways individuals react to memory loss and dementia diagnoses, this chapter lays out ways to come alongside patients and their families at the very start of this journey in the hope that we might be able to continue such a relationship as the disease progresses. This chapter lays out common spiritual questions that people may have upon receiving a diagnosis, and suggests ways to respond to reactions that can range from denial to fear to despair.
Chapter 4: In the Beginning: Early Stages of Dementia Diseases
This chapter walks readers through the earliest stages of dementia diseases, which typically last two to four years. Because symptoms wax and wane in these early stages, many people living with the disease—and their caregivers—sometimes doubt the diagnosis and live in denial. This chapter considers how to navigate the ups and downs of the early stages, as well as how to come alongside people as they process through what their diagnosis will mean. It also offers practical ways of ministering to those in the early stages, including how to conduct a Spiritual Assessment; how to help maintain consistency of religious practices and symbols; how to use spiritual reminiscing to uplift those who are beginning to lose memories; and how to begin to educate a congregation about dementia diseases.
Chapter 5: As Time Goes On: Middle Stages of Dementia Diseases
This chapter focuses on the middle stages of dementia diseases, which can last anywhere from two to ten years. It discusses the changes in behavior that those with dementia may undergo over time, emphasizing compassion and empathy as patients suffer from a disease beyond their control. This chapter considers common symptoms that emerge in the middle stages, as well as emotional concerns to be aware of including confusion, anxiety, fear, and frustration. It offers practical advice on how to offer spiritual care during these years, including how frequently to visit and what type of dialogue works best; as well as concrete ideas for ministry like using music or aromas to appeal to senses and help people access deep memories.
Chapter 6: When the End is in Sight: Late Stages of Dementia Disease
Chapter 6 considers how to minister to those in the late stages of dementia leading up to death. During the late stages, which typically last from one to three years, people receive the least visitors. This chapter highlights the need to continue to visit and minister to people, even when their recognition and responses are minimal. The chapter discusses symptoms of late stage dementia, as well as tools to connect with patients through touch, nonverbal communication, and the simple act of being present.
Chapter 7: So, What Do I Say?
One of the greatest hindrances in ministering to those with dementia is the difficulty of knowing what to say, how to say it, and how to express some things without words. Chapter 7 focuses specifically on the act of communication, both verbal and nonverbal, at each stage of dementia diseases. Offering concrete tips such as how to respond to repeated questions and stories, how to steer conversation when people become distressed or frustrated, and how to communicate through body language and physical touch, this chapter equips readers with vitally important tools for spiritual nourishment.
Chapter 8: Who’s Caring for the Caregivers?
More than 15 million Americans provide unpaid care for people living with Alzheimer’s disease and other dementias. Caregiving is emotionally and physically demanding work, and oftentimes caregivers shoulder much of the burden alone. Chapter 8 considers how those in ministry can also meet the needs of caregivers, which may go unnoticed next to the many needs of the person they care for. This chapter explores ways to support caregivers in the roles, such as hosting them and their loved one for dinner; accompanying them to doctors appointments; and facilitating family meetings with adult children; and also considers how to minister spiritually to caregivers through acts such as bringing communion or worship services to them if they are no longer able to attend church regularly.
Chapter 9: A Church-Wide Response
As the rate of dementia diagnoses continues to accelerate, communities of faith have an incredible opportunity for spiritual growth as they intentionally recognize need and discern a call to minister to families in life-giving ways. Chapter 9 focuses on what faith communities as a whole can do to address this growing need, and how they can foster community interaction, intergenerational experience, and practical service. Moving beyond the individual response of ministers and lay leaders, Chapter 9 suggests ways for the body of the church to draw on existing resources, volunteers, and community relationships to establish new support groups, educate others, and meet the broadest range of needs for families affected by dementia diseases.
Chapter 10: Case Studies
Chapter 10 provides true-to-life scenarios to help readers consider how to respond well in similar, real-life situations. Covering a range of scenarios at each stage of dementia diseases and following up with discussion questions, this chapter enables readers to apply what they have learned and offers a chance for deeper reflection.
Chapter 11: Sample Worship Services and Devotions
Chapter 11 provides templates for worship services designed for people in the middle to late stages of dementia, who are often no longer able to attend services in a church. Offering an easily adaptable format and additional suggestions for variations on theme and content, as well as advice on how to handle different challenges that can arise during such services, this chapter is as an invaluable resource for practical ministry.
The concluding chapter underscores the critical importance of the church’s response to caring for those with dementia and their families. Acknowledging the many challenges such care presents, this chapter also highlights the significant opportunity to enter into relationship with people who often feel forgotten or alone and to remind them of God’s love and care for them. This chapter exhorts those in ministry to answer the call to care for the least of these, and to trust God to guide and bless such work, reminding us: God says, “Be not afraid! I go before you always! Come, follow me.”
About When Words Fail
More than 5 million Americans are living with Alzheimer’s disease today—a number expected to triple in the next 30 years. Many more experience other forms of dementia. For faith communities, this represents a crucial opportunity for ministry and practical care—one that many aren’t adequately prepared for.
Amidst mental and physical decline, those suffering from dementia diseases still deeply need human connection and spiritual nourishment. Sadly, as memories fade and the ability to communicate weakens, those with dementia may find themselves neglected or forgotten by the larger community. Despite good intentions, often times when words begin to fail for people with dementia, they also fail for those around them, who don’t know what to say or what to do.
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 book is rich with practical examples and tools designed to meet these emotional, physical and spiritual needs, and devotes particular attention to ways of communicating even after words have failed. Taken together, these tools give a better understanding of how to visit and support not only people living with dementia but their caregivers, too.
What You’ll Learn
- To identify those in their communities who may be showing signs of dementia, and how to support them as they seek a diagnosis.
- To communicate with dementia patients as their language and communication skills fail.
- Practical ways to meet the emotional, spiritual and physical needs of people with dementia diseases—and the needs of their caregivers as well.
This DVD is filled with teaching, demonstrations of effective ministry and inspiring ways to bring joy and spiritual nourishment to people who suffer from dementia and their caregivers – even after words have failed.
Why this was written and about Westminster Canterbury Richmond
Westminster Canterbury Richmond, a continuing care retirement community in Richmond, Virginia, dedicates itself both to excellence and compassion and has recognized that memory care is a critical area of service to be explored and developed. The campus is home to 900 residents served by a workforce team of 700. More than 100 residents per year receive life care scholarship assistance through the organization’s Fellowship Program. It is a place that takes its roots in faith seriously, nurtures an active spirit of generosity and strives to break new ground as a national leader in senior living.
Dementia diseases are on the rise. This reality, and its implications, has spurred the organization toward finding ways to help current and future residents, caregivers and church families deal with the impending wave. Each week our memory care residents benefit from multiple offerings of music, art, horticulture and exercise therapies designed to significantly improve quality of life.
Westminster Canterbury is an incubator for effective interactions and a testing ground for supportive approaches for families, churches and residents alike. Through our collaborative work, we are able to engage families, clergy, volunteers, interns and staff in discovering how to help residents cope with the real and devastating effects of dementia. It was into this unusually fertile soil that the When Words Fail book, DVD and Study Guide were realized.
This project was made possible by an innovation grant from LeadingAge, a national affiliation of senior living providers and a generous anonymous donor whose spouse suffered a long journey through Alzheimer’s disease. In deciding to support this project our donor spoke this truth: “Dementia IS a spiritual issue. Regardless of your faith affiliation, it starts with a fear so deep it rocks you. And that is a spiritual experience in need of help!”
“Words may fail, but the Spirit of God continues to live within each of us. It is our hope that When Words Fail: Practical Ministry to People with Dementia and Their Caregivers will equip you to offer valuable spiritual care. Thank you for your interest in ministering to people living with dementia. May God bless you as you offer God’s blessings to others.”
-Kathy Fogg Berry