Ministering to Families Facing Alzheimer’s and Related Dementias: How Do We Begin?

Every 65 seconds another person is diagnosed with Alzheimer’s or related dementias.[1] Another family is thrown into the chaos and fear surrounding this illness. Ironically, most families leave the doctor’s office without being told what dementia is, what it will mean to the person living with it, and what it will mean to the family as they love that person through it.

Four out of five of these families will fracture under the stress. Most will live their journeys without guidance or support. They suffer physically, financially, emotionally, and spiritually. Isolated. Alone. Forgotten.

Theologian and author, John Swinton tells us: “The problem is not that people with dementia forget. The problem is that they are forgotten.”[2] Retired United Methodist Bishop Kenneth Carder adds that when we, the church, forget these families, they might believe that God has forgotten them, also.

The families our ministry serves bear out these truths. Care partners, often through tears, tell me some version of the following, “My wife and I loved, supported, and participated in our church all our lives until dementia came. Now, friends, sometimes family, and even our pastor no longer come to see us.”

What keeps us from reaching out to these families?

Could it be the stigma associated with this illness? Sadly, lack of dementia knowledge can prevent us from realizing that people who live with dementia are “still here,” that they have value and worth. Bishop Carder tells us that “nothing should diminish the value of a person who has a brain disease any more than it should the value of a person who has a heart disease or kidney disease or liver disease.”[3]

Nevertheless, the crushing stigma exists. The church has the opportunity to help people living with dementia say what they want us all to hear: “See me, not my dementia.”

Or perhaps it is fear of the unknown that keeps us away and that keeps us from recognizing how desperately both the people who live with dementia and those who are loving someone through this illness need our support, our visits, and our kindnesses. Dementia education can calm those fears.

Ellen, primary care partner for her husband, Don, shared her pastor’s explanation for not visiting. He told her, “I have wanted to visit Don, but I just do not know what to say.” Don and Ellen lived with Don’s illness for eight years before Alzheimer’s took him. During those years, this family received no visits from their pastor. Ellen, grieving and feeling abandoned by her pastor, finds it painful to go to church today.

Other care partners have heard similar explanations from their pastors, friends, and family: “I don’t know what to expect. I’m afraid I might upset him She won’t remember anyway.”

It is true there is no cure for dementia, but there is a far better way for families to walk this hard and lonely road. We can learn to walk beside them. We can educate ourselves and then educate others. Only then can we erase the stigma associated with this illness and bring dementia into the light .

I am often asked, “Where is God in all of this?” My faith tells me that God is where he has always been . . . holding his children. The questions today are, “Where is the church? Where is the community?”

Maya Angelou told us: “Do the best you can until you know better. Then when you know better, do better.”

How can we, churches and communities, “know better”? Where do we begin?

The answers will be as different as are the faiths, the communities, and the leaders themselves. Our own dementia outreach began with a simple conversation in our church parking lot. Two friends, each loving their mothers through Alzheimer’s, found life-altering comfort in sharing their journeys. They invited others to join them for what became our first Alzheimer’s Family Support Group. They had no budget, no plan. What they did have was a shared belief in the priesthood of all believers and the strong conviction that they were making a positive difference in the lives of these families.

The conversation that began in the parking lot of Due West United Methodist Church in Marietta, Georgia, continues to grow. Loving Through Dementia, our all-volunteer dementia ministry, serves more than fifty families monthly through multiple support groups and private consultations. We serve hundreds of families yearly through annual care partners’ conferences, workshops, and seminars. All our services and events are free.

The recent launching of our website, lovingthroughdementia.org, transformed this local ministry into a global one. The website provides guidance for families and leaders of all faiths and all communities. Its “Action Plan” provides a list of ways for churches and communities, small and large, to better serve these families. It offers guidance and resources to help make their choice of service a reality. It sends the very clear message, “You are not alone.”

Ours is a thriving ministry, but that is not my message here. My message is that we did not begin where we are today!

It is not important how big the beginning is; it is beginning that is important!

Loving Through Dementia Action Plan (A more robust version and additional resources are found on our website):

Encourage with acts of kindness. Pray. Phone. Text. Send cards. Deliver meals.

Visit. Being present matters. Listen; learn about the person with dementia and the family loving that person through it.

Support. Raise dementia awareness and knowledge throughout your church or community.

Become a Dementia-Friendly Church and Community. Send the clear message to people living with dementia and to those who love them that they are included and that they belong.

Begin a Support Group. A free step by step guide is included in this Action Plan.

Host a Conference, Seminar, or Workshop: A free step-by-step guide is included on our website. If your resources will not support hosting a dementia education event, then join with other churches or community organizations to make this an ecumenical event.

Begin a Music or Art Ministry: People living with dementia often retain music, art, poetry, and prayer until the end of life.

Begin a Stole Ministry. Create liturgical art that will not only raise dementia awareness but will honor families facing dementia.

Begin a Stephen Ministry. In addition, guide your Stephen Ministers to lovingthroughdementia.org to gain dementia knowledge and skills.

Begin a Congregational Respite Program. Begin a respite program or join forces with other churches or community organizations.

Become Advocates for Care and for a Cure. Promote dignity and person-centered care for all who live with Alzheimer’s and related dementias as we support care partners and work together to advance better treatments, prevention, and a cure.

This resource is from the ministry of Due West United Methodist Church. For more information and resources check out the website http://lovingthroughdementia.org.

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[1] Alzheimer’s Disease: Facts & Figures, https://www.brightfocus.org/alzheimers/article/alzheimers-disease-facts-figures

[2] Susan Groseclose, Large-Print Leader Guide for Kenneth Carder’s Alzheimer’s/Dementia: Ministry with the Forgotten, https://www.tnumc.org/wp-content/uploads/2018/08/Large_Print_Leader_Guide_7%E2%80%9426%E2%80%9418.pdf

[3] Kenneth L. Carder. Ministry with the Forgotten: Dementia through a Spiritual Lens (Abingdon Press, 2019).