A partner ministry of The General Commission on Religion and Race | | Square with the word "dementia" written in tiles | |
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TheVOICE
of the
United Methodist
Disability Connection
MENTAL HEALTH EDITION
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Greetings and welcome to The Voice, Mental Health Edition!
The theme for this newsletter is "Dementia." According to the CDC, "about 10% of the population age 65 and older in the United States has dementia."* Dementia affects each person differently. I've heard it described as persons with dementia are all in the same snowstorm but every snowflake is different.
In this newsletter we have a wonderful collection of articles from a variety of perspectives: church involvement, personal accounts, caretakers and support groups. We'll look at the types of dementia and provide a variety of resources for congregations and caregivers as well. I hope you find this newsletter informative and beneficial.
Due to my own struggles with dementia-like symptoms (see "Lost in the Abyss"), this will be my last time editing this newsletter. It has been an honor and a joy to serve in this way.
Jasmine Ray-Symms, MA
Newsletter editor,
Mental Health Team
*National Health Statistics Reports, Number 203, June 13, 2024
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What Congregations Offer to People Living with Dementia
Adventures with Alzheimer's
Types of Dementia
A Caretaker's Adventure
Dementia Support Group
Lost in the Abyss
Alzheimer's Association Links
| | What Congregations Offer to People Living with Dementia | | |
DEMENTIA: one of the most fear-igniting words in the English language, especially when it is a personal diagnosis or the labeled condition of someone we love. Yet roughly 1400 people receive the dreaded diagnosis every day, and the number is expected to double by 2060.
I well remember that dreary November day in 2009 when the doctor spoke the dreaded word to Linda and me. It launched us on a treacherous journey that ended her life in October 2019. Though the journey included traumatic losses, it also brought experiences of profound joy, enduring love, and deeper awareness of the significant role of faith communities.
Congregations are uniquely positioned to counter the stigma, isolation, fear, and hopelessness associated with the diseases that fall under the umbrella of Dementia. After all, the median age of our membership is almost 20 years older than the general population (57 versus 39) and one in nine persons age 65 and older have a form of dementia. We, therefore, can help lead society in caring for people with dementia
I have identified three indispensable gifts that faith communities bring. One is a broader, more hopeful lens through which to view dementia. It is the lens of Grace! Grace affirms that our identity and worth are not in our capacities, but in the One to whom we belong. We were created by God’s love and made in the divine image, and nothing in life or death can separate us from that love. We are participants in the flow of God’s love, assured that no act of love is ever wasted!
Grace, therefore, counters the notion that dementia robs us of our identity and worth by declaring: You are a beloved child of God, bearing the divine image, and a full participant in the ongoing flow of God’s eternal love!
Furthermore, faith communities provide a place of belonging, where we are valued as beloved children of God. The tragedy of those with dementia is not that they forget, but that they are forgotten. The isolation not only creates loneliness, it compounds the losses.
Our memories and identities are held in community. Only a small portion of our past is retained in the brain. Other people have memories and experiences of us that we no longer recall. Therefore, we only lose our memories and identity if we lose our community. We are stewards of one another’s memories and personhood.
People living with dementia are gifts, means of grace, and not mere objects of ministry. As the Apostle Paul reminds us, “God chose what is foolish in the world to shame the wise; God chose what is weak in the world to shame the strong” (1 Cor. 1:27); and we meet God in “the least of these” (Matthew 25:31-41).
Ministry with those who live with dementia is, therefore, a means of growth in our own discipleship and relationship with God. Though I would not minimize the losses and the challenges of caring for a loved one with dementia, I give thanks to God for the privilege of caring for Linda in her vulnerability and losses. Through those years, I grew in my capacity to love without reciprocity, to live in the present moment, to appreciate the simple expressions of love, to “kiss the joy as it flies by,” to participate in the flow of God’s eternal love, and to rest in the assurance that love never ends!
| | Adventures with Alzheimer's | | |
Hello,
My name is Steph. I want to share with you my Adventures with Alzheimer’s Disease. I am a retired speech pathologist who has been diagnosed with dementia. I decided I would approach this challenge as I have others: move forward and trust in God. After all, as a speech pathologist, I had guided others on the same path I am facing and that should make it easier (or so I thought). My first realization, and most significant realization, was that I was not aware of all that I would find on this path. So, with determination to control what I am capable of, I am leaning on God for the rest.
To start, I would like to share things I keep on my daily gratitude list. These include: God, my loving husband - with his twisted sense of humor, my sense of humor which has stayed intact, and an amazing care team specializing in Alzheimer’s disease that we were able to connect with.
Initially, my time with my care team included multiple assessments, including a PET scan of my brain. The good news was I have a brain! The bad news was that there were numerous squatters, also known as amyloid plaques, on all my cerebral lobes.
As the days passed, I had to accept several changes in my lifestyle. Some of these were easier than others. For example, I have a built-in excuse for forgetting almost anything except for taking my pills. Some of the more difficult adjustments include not being able to drive and, more recently, not being able to walk to places or go anywhere on my own. However, I do understand
this is needed as I have taken some walks in the neighborhood that were longer than intended. And did I mention that I have an understanding husband?
I understand there will be more difficult challenges as things progress and not all will be as easy to find any humor in, but for now, and hopefully going forward, my husband and I will not lose our sense of humor or our faith in God.
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Dementia is probably one of the scariest words we have right now. It is the 7th leading cause of death among US adults, and one of the major causes of disability and dependency among older people worldwide. The impact of dementia on our churches is growing. An increasing number of United Methodist Churches offer educational programs to address dementia. (See resource links below.)
Discipleship Ministries (Discipleship Ministries | Ministering With Families Facing Dementia) notes that nearly every congregation has members affected by some form of dementia. This is one strength of a connectional system: each church does not have to come up with its own plan but can borrow from other churches or even other conferences. Although there are many more kinds of dementia, here are the most common.
Alzheimer’s (www.alz.org) is the most common form of dementia and affects an estimated 60-80% of all people with dementia. Signs of this condition often begin in a person’s 60s or 70s or earlier in about 5% of cases. The main enduring symptom of Alzheimer's is loss of memory. Other symptoms include being unable to retain new information and repeating things many times. Over time people may lose physical abilities and show changes in behavior and personality. Eventually even basic functions such as walking, communicating, and swallowing become difficult.
Vascular Dementia (www.stroke.org and
www.mayoclinic.org/diseases-conditions/vascular-dementia/symptoms-causes/syc-20378793 is considered the second most common type of dementia, accounting for about 15-30% of dementia cases in North America and Europe, although only 5-10% will involve solely vascular dementia. It occurs when blood flow to the brain is blocked off. The symptoms appear suddenly, and can involve impaired motor skills, hallucinations, and inappropriate emotional outbursts.
Lewy Body Dementia (www.lbda.org) affects nearly 1.4 million Americans, most over the age of 50. Hallmark symptoms include visual hallucinations and delusions as well as REM sleep behavior disturbances. Diagnosis is not done by any specific test but by a doctor’s clinical assessment.
Frontotemporal Dementia (FTD) (www.theaftd.org), formerly called Picks Disease, affects 60,000 Americans each year. This is the most common form of dementia for those under age 60. Behavior, language, and motor function are affected. Because it starts in the frontal lobe, which is responsible for mood and behavior, it can often be mistaken for a psychiatric disorder. Diagnosis involves specific tests including an MRI and a neurological exam.
Parkinson’s Disease Dementia (www.michaeljfox.org or www.parkinson.org) is diagnosed by a decline in thinking and reasoning ability in those who have had Parkinson’s for at least a year. About 30% of people diagnosed with Parkinson's later develop dementia. Genetics can contribute to one's risk for the disease but experts now think that environment plays a strong part, with toxicants such as pesticides and industrial solvents leading to developing PD. The disease affects about 2% of Americans over age 65. Diagnosis is largely clinical. Symptoms include delusions, especially of the paranoid type, motor rigidity or tremor, and sleep disturbances - especially excessive daytime sleepiness and REM sleep disorder. Medications can address symptoms and exercise programs can address mobility and quality of life.
Creutzfeldt-Jakob (www.cjdfoundation.org) and Huntington’s Disease (www.hdsa.org) are less common forms of dementia.
Mixed Dementia is a condition where a person has more than one kind of dementia at the same time. The most common forms involve Alzheimer's, vascular dementia, and Lewy Body dementia. The presence of more than one type can be difficult to diagnose because of overlapping symptoms but receiving an accurate diagnosis can have an impact on disease progression as well as treatment options.
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Contributed by Vickie Johnson, Oregon-Idaho Conference
Photo by Milad Fakurian on Unsplash
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I seem to adjust very well to the caretaker role. My first role was when I had to take care of my first wife in the last year of her life. My duties that year were to give her food in the form of a liquid (Total Parenteral Nutrition) and antibiotics through a port, and to administer and monitor all her medications. She started chemotherapy at the beginning of 2015 but did not take the chemo well. The last time she went to the emergency room her cancer had spread throughout her abdomen and they could not unblock her intestine. I was advised to pull her off life support since she had a dead bowel. This happened on a Wednesday, and that Friday she breathed her last breath.
In September of 2024, I noticed that my second wife’s short-term memory was very poor. We made an appointment to see a specialized nurse practitioner. She administered the Montreal test, and my wife did not pass. She was diagnosed with Mild Cognitive Impairment but later diagnosed with Alzheimer’s. Since I have an excellent memory, I complement her lost memory well. We saw a neurologist about getting a new type of infusion treatment. This new drug will remove the plaque from her brain, but this will only slow down or stop the progression. She will still have the memory issues. She has not shown the symptoms of anger or aggressiveness that others with Alzheimer's get and I hope the memory loss will be the only symptom she has. I try to keep her active with our church. Both of us have very good support systems in place.
As a caretaker for my wife, I am picking up more household chores where I can. I fill her weekly pill box and remind her to take her pills. I also took over her bank account and I hold her charge cards. I have her driver's license since she is not allowed to drive. I take her wherever she needs to be. We both share in the cooking, but I do the prep work since I know where the utensils, pans, refrigerated and freezer food, pantry, and spices are. In other words, I am the sous chef and she is the chef. I always involve her when I am cooking. She still does the vacuuming and mopping while I gather the trash. She puts the trash bins next to my wheelchair ramp so I can take it out of the house. I write the check to the mowers and all she has to do is tape it to the door. We both do our own laundry, but I might add some of her clothes to mine to help her out. I have asked my son to help us around the house in lieu of a Christmas gift this year. I do realize that the amount of support needed will only increase, but I have God and family that I can rely on.
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Contributed by Tyran King, Indiana Conference
Photo by Rosie Sun on Unsplash
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Upon learning that my wife has Alzheimer's dementia I needed some type of support structure. I had my Stephen Minister group, family, and the medical doctors, but I was still looking for more. At my church, St. Luke’s UMC in Indianapolis, we have over 40 different small groups. I found out that we have a dementia support group that meets once a month.
When I wheeled into the meeting room I was greeted by a speaker who I recalled giving a continuing education session on dementia early last year. The room quickly filled up with caregivers. Over 20 people were there including about 6 new people. Beginning with the new participants, we went around the room and shared our situation with dementia. Updates were given by the others. Several people reached out to me afterwards to give me advice.
I went to another session about two months later and saw that the group had grown to about 25-30 people, with 8 new people this time. I was amazed at all the different scenarios that were shared at this session. Since all the reports and discussions are highly confidential this is a safe group to share with. I only wish that I could go to this group every month, but since I am one of the Stephen Leaders and we meet the same day, I must pick and choose.
This group continues to grow and was recently moved to a bigger space. It would be very beneficial for other churches to have a support group like this. I feel that these people, along with the leader, have really helped me get through this. Through our faith in the Lord, my wife and I know that we will live our lives the best we can.
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In 2017, after struggling with mental illness for over 40 years, unable to stabilize, I underwent 7 months of electroconvulsive therapy for schizoaffective disorder. It annihilated my memory. It didn’t work. I was still lost in the delusion that I was literally in hell, still hallucinating demon bugs crawling out of my skin and over my scalp. Night terrors changed my sleep into a hellscape. My screams to God for relief seemed to go unanswered, but then we found a medication that brought me out of the darkness. I learned to laugh again, to dream about the future. I thought I was okay.
For five years I reveled in my sanity. I trained to become a Certified Lay Minister. I wrote a book and tried to find an agent. I taught courses on mental illness. I volunteered, not just in my church, but also as the editor of this newsletter. I was excited about life and was on track to hear the words I prayed I would hear from God, “Well done good and faithful servant.” (Matthew 25:23)
That changed. It was gradual. The memory loss became more pronounced. I had a cognitive assessment in 2019 that showed mild cognitive impairment. I had another one in 2024, and I’d worsened “significantly”. The terms Major Neurocognitive Disorder and Frontotemporal Dysfunction have been assigned to me. Big words that attempt to describe what I am going through. My brain no longer works the way it is supposed to. I was told I don’t have dementia although I have all the symptoms of it. One neurologist said, “you don’t have dementia, your brain just thinks you do.” There’s no prognosis. The doctors don’t know what’s going on – I’ve seen three neurologists. They can’t tell me what will happen next.
Being unable to trust your mind is terrifying. It’s not just memory loss, it’s misremembering. I can’t trust my memories. I can’t trust myself. I had to give up driving. I had to take away my parents’ driving privileges and I swore I wouldn’t put my children through that. So, when I got lost downtown, had near-miss accidents, and went down the wrong way on a one-way street, I voluntarily stopped driving.
The mental confusion led me to step down from most of my ministries. I struggle to stay on top of things or do the work required to lead. I can’t read a book or watch a TV show without getting lost, unable to follow the plot line. This will be my last newsletter. I’m still serving God, just in different ways. I help instead of lead.
I don’t know what’s next. I feel lost. I’m struggling to trust God through this. I’ve been through so much, faced so many challenges, I thought I could rest. I was living the life I wanted and now I’m back to facing challenges again. But God is with me. The people that love me support me. I can still write and preach. For now, that has to be enough.
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ORGANIZATIONS:
Alter Dementia alterdementia.com/
Resources that support African American faith communities in becoming dementia friendly congregations
Alzheimer’s Association www.alz.org/
Loving Through Dementia https://lovingthroughdementia.org/
Respite for All https://respiteforall.org/
Resources and training to help congregations build a dementia respite ministry based on the model of social care
BOOKS:
Dementia-Friendly Worship: A Multifaith Handbook for Chaplains, Clergy, and Faith Communities. Edited by Lynda Everman and Don Wendorf, 45 different authors. 2019. Jessica Kingsley Publishers
Ministry with the Forgotten: Dementia through a Spiritual Lens. Bishop Kenneth L. Carder. 2019. Abingdon Press
When Words Fail: Practical Ministry to People with Dementia and their Caregivers. Kathy Fogg Berry. 2018. Kregel Ministry/ Kregel Publications
TRAINING:
Discipleship Ministries - Dementia and the Church Webinar Series - 8 dementia-focused training webinars for congregations. www.umcdiscipleship.org/articles/webinar-series-dementia-and-the-church
Encore Ministries - Ministry with the Forgotten: Dementia through a Spiritual Lens. Free study with downloadable leader’s guide and videos for 5 one-hour small group sessions based on the book. encoreministry.org/dementia-small-group-study/
Respite for All - Whirlwind 2026 Respite Leadership Conference March 1-3, 2026 at Asbury UMC, Birmingham, AL. respiteforall.org/whirlwind-2026-conference/
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The Mental Health Team is a group of laypersons and clergy, representing US UMC annual conferences, who meet monthly by Zoom. We are looking for new members to join us in living out this call.
As always, we welcome your questions, feedback, and suggestions. Please send them to us at the committee e-mail address and include "Mental Health" in your subject line.
Mental Health Team of the Disability Ministries Committee of The United Methodist Church
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