“When Alzheimer’s Disease or Other Dementias Hit Home,” Liahona, August 2021
When Alzheimer’s Disease or Other Dementias Hit Home
Family caregivers don’t have to care for a loved one alone. There are many resources that can help.
Illustrations by Chiara Zarmati/Salzman International
One important lesson that I have learned from Nephi is his willingness to ask the Lord to guide him in his service. For the past seven years, I have served professionally as the executive director of the Alzheimer’s Association of Utah. I have seen the impact of Alzheimer’s disease and other dementias wreak havoc in the lives of so many people. Like Nephi, I have often prayed about how I can be guided in my work to provide the best level of support to people living with dementia as well as their caregivers.
More than 20 million people in North America provide unpaid care each year for nearly 7 million people living with Alzheimer’s or other dementias. I’d like to share the story of one of these many family caregivers, my friend whom I will call Debbie.
When Debbie was 62, she and her husband invited her 86-year-old mother to live with them. Debbie’s mother had mid-stage Alzheimer’s disease and was unable to care for herself. Debbie lamented that her once sweet, temple-serving, ministering, Relief Society president mother was ravaged by Alzheimer’s disease. Now Debbie was required to care for her mother, the same person who had provided care for her and so many others throughout her life.
Debbie had to assist her mother with all the activities of daily living like dressing, bathing, and eating. Her mother continually repeated questions about what was happening. She frequently became disoriented and often fought against the care she was receiving because she could not remember what was happening or why it was happening. She became agitated and often lost her temper.
Her mother suffered from sundowning, which meant she was confused about when to sleep and when to be awake. Debbie awoke in the middle of the night to find her mother wandering through the house extremely anxious and disoriented. Since her mother no longer recognized Debbie’s husband, Debbie was the only one who could calm her mother down.
Twice Debbie’s mother was able to leave the house and start walking down the street in the middle of the night. The first time it happened, Debbie fortunately heard the front door close and was able to retrieve her mother before she had wandered too far. However, the second time, her mother left the house undetected, and Debbie received a phone call at 3:30 a.m. from the local police letting her know that her mother had been found walking down the road in only her nightgown.
The continual stress and effort that Debbie gave to care for her mother became intense. She did not know where to turn for help. Her two siblings didn’t accept that their mother had Alzheimer’s disease, nor that the symptoms were as bad as Debbie described. Their denial was reflected in the lack of assistance they offered. Since both of them lived hundreds of miles away, they were unable to regularly visit or offer help anyway.
Debbie felt awkward turning to friends, ward members, and other neighbors because she wasn’t sure how to explain her mother’s condition, and her mother didn’t respond well to new people. Debbie rejected the idea of getting help from professional services because she felt responsible to serve and care for her mother. Moving her mother to an assisted-living community was out of the question as well since her mother had once said she didn’t want to go to any place like that.
Week after week and month after month, Debbie continued giving more and more care to her mother. She focused less and less attention on her own health. One afternoon about 20 months after Debbie’s mother moved into Debbie’s home, Debbie’s husband returned from the store to find his mother-in-law agitated and pacing around the kitchen. He found Debbie collapsed on the living room floor. She was breathing but unconscious. She was taken to the hospital and was admitted due to a mild heart attack brought on by exhaustion.
The Stress and Isolation of Caregivers
Unfortunately, Debbie’s story is all too common. As the executive director of the Alzheimer’s Association of Utah, I hear a version of this story often. Due to the nature of the disease and the impact it has on memory, cognition, and personality, there is often a stigma associated with Alzheimer’s or other dementias that leads to isolation for caregivers and a lack of engagement with family and others. This stigma tends to discourage family caregivers from seeking outside assistance.
In December 2020, I was called to be the bishop of my ward, and I gained a different insight into the struggles that people like Debbie face. I have been able to counsel with members who are caring for loved ones with various medical conditions, including dementia. Their trials, while certainly refining them spiritually, wear them down physically and mentally. I found that my role as bishop was to connect my ward members with resources that could provide comfort, support, and real help.
I engaged my ward council. Prayerful consideration was given to determine who would be the right ministering brothers and sisters to provide the best support. When we invited these ministering brothers and sisters to serve, I often connected them with community organizations to provide training and offer support. I made assignments of where and when to help. In their usual loving way, the Relief Society jumped into action to provide support to sisters and brothers who were caregivers.
In most instances, caregivers downplay the dementia symptoms and avoid involving other family members or friends and neighbors. This isolation deprives the person living with Alzheimer’s and their caregiver from receiving much needed support. Likewise, it increases the stress, both mental and physical, on those providing care.
Because of the strenuous toll on caregivers, at least 36 percent of them die before the person for whom they are caring dies. Often it is not until the family is in crisis that they seek outside help, and at this point intervention and support services are limited in what can be offered.
I have relied heavily on the counsel from President Henry B. Eyring, who said: “Remember that when the Lord lets us encounter someone in distress, we honor the good Samaritan for what he did not do as much as for what he did. He did not pass by. … He did what he could for the beaten man and then put in place a specific plan for others to do more.”
In the same general conference address, he mentioned the toll on caregivers: “Even though extended and loving service to people is richly rewarded, you have learned that there are physical, emotional, and financial limits to what is possible. The person giving care long enough can become the one who needs care.”1
For these reasons and many others, it is important for ward council members to provide support and assistance, even when caregivers aren’t quite sure what can be done. The ward council has many resources available to them through Church programs and from outside community agencies.
Resources to Help
Another friend of mine, whom I will call Frank, reached out to me in my role with the Alzheimer’s Association a few years ago while he was serving as a bishop. He was concerned about several members of his ward who had been diagnosed with Alzheimer’s disease and suspected that others had some form of undiagnosed dementia. Frank was anxious to meet the needs of these ward members and support other members serving as caregivers. Unaware of any resources, he turned to me out of desperation with a plea for help.
We arranged for a presentation to his ward’s empty-nester home evening group. Normally about 25 people attended this monthly activity. After it was announced that the presentation would be about Alzheimer’s disease, more than 100 people attended. Many were concerned about getting Alzheimer’s disease but weren’t sure what it is or how they might be able to reduce their risk.
During this meeting, I shared a wide variety of tools available through the Alzheimer’s Association and from other community sources.
I encouraged them to visit alz.org to find free web-based services offered by the Alzheimer’s Association and other community organizations. The site includes family support services as well as education programs about the signs and symptoms of the disease and how to reduce risk of developing it. The site offers an online Alzheimer’s and Dementia Caregiver Center, with helpful tools for caregivers. It also provides connections for caregivers to local support groups, care consultations, and opportunities to connect with others who are in the early stages of the disease. Likewise, ward council members can use this resource to better understand the disease and learn how they can offer assistance to ward members serving as caregivers.
Another effective service is a free 24/7 helpline at 800-272-3900. Trained consultants offer callers advice, information about care, help with crisis situations, referrals to local organizations, and support in more than 200 languages and dialects.
The site communityresourcefinder.org is a database of organizations in the United States that offer services for people living with dementia and their caregivers. Services include respite care, adult day care, assisted living, and connection to local area agencies on aging. Alzheimer.ca provides similar help for those in Canada.
The Church has an excellent web page called “Support for Caregivers” that provides a number of helpful resources. It can be found at this shortened URL: bit.ly/3oXe5gZ.
As I shared these resources with Frank’s ward council, other members, and caregivers, he observed increased support for and engagement with those members affected by Alzheimer’s and other dementias in his ward and stronger support for caregivers. Increased knowledge can make all the difference!
In my capacity as bishop, I have seen these resources become valuable to help ward council members be more aware of Alzheimer’s disease and dementia and more capable of offering meaningful service to ward members who are caring for loved ones with dementia. Just like Nephi praying to ask the Lord where he might go to find ore from which he could make tools to build a ship, as ward members pray for resources to help those living with dementia and their caregivers, they can be guided to tools like those mentioned above that will allow them to minister with meaningful service. These resources will allow them to figuratively build a boat of care, support, and Christlike service.
Once my friend Debbie was released from the hospital, her husband and children sought out the Alzheimer’s Association. The local chapter provided support to the family. Debbie found the assistance she needed and realized the importance and power of allowing others to assist in caring for her mother.
The experiences of Debbie and Frank and myself within my own ward are evidence that there is a strong need for education and supportive information for caregivers, for ward leaders, and for people living with Alzheimer’s disease or other dementias. Perhaps more importantly, their experiences reflect the number of people who are suffering in silence and don’t know where to turn for assistance. Their stories demonstrate that many people in each ward and branch of the Church are dealing with these challenges.
The Christlike service we give to those with dementia and to their caregivers can help bring them peace.
Within the membership of The Church of Jesus Christ of Latter-Day Saints in North America, an average of 5 people in each ward or branch are living with Alzheimer’s, and nearly 20 people are providing care for someone in the ward or elsewhere. Wards located in areas with higher concentrations of people age 65 and older will see even higher numbers of people affected.
Because of the stigma associated with Alzheimer’s, key leaders like bishops, Relief Society and elders quorum presidents, and ministering brothers and sisters are often not brought into the care circle until the family is in crisis. Ward leaders and others who want to help usually have little knowledge about Alzheimer’s disease and dementia and even less information about local assistance available to families living with the disease.
Yet these resources are available for everyone at no cost. They can be lifesaving tools and provide hope and comfort to those who are in great need.
Certainly, local leaders and members are not expected to be experts in the care and support for someone living with Alzheimer’s, but a little bit of knowledge can become invaluable to families who are struggling to provide care.
I believe that those who serve our brothers and sisters living with dementia and their caregivers are in part those whom the Savior talked about when He said: “I was sick, and ye visited me. … Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me” (Matthew 25:36, 40).
With these resources and fervent prayer, you can guide others who are living with Alzheimer’s and their caregivers to more peace and support during their time of struggle and difficulty. Truly this service is Christlike in nature and charity in action.