Deneen Day’s mother and uncle live in the same assisted living facility. As a caregiver for both, she misses the personal level of care she used to provide before the coronavirus pandemic.
Her mother, Tillie Day, who has been diagnosed with Alzheimer’s disease and vascular dementia, is under hospice palliative care. Two weeks before visitors were banned, she started a decline. She’s got a picture of her mother from March 10 – the last day she saw her in person.
“The biggest fear for me is her declining and her being by herself. It is just devastating, and it is just hard,” Day said. The facility has set up videoconferencing, Day said, but videoconferencing does not work for everyone. “They are confused, they don’t understand, they can’t hear, you can’t touch them, you can’t console them, and you do it, but it does not give you any solace,” Day said.
While the COVID-19 pandemic threatens the health of millions in this country and around the world, the novel coronavirus presents unique challenges for more than 5 million Americans living with Alzheimer’s and their caregivers. For Ohio’s 600,000 Alzheimer’s caregivers, the Coronavirus outbreak and the stay at home order issued by the Ohio Department of Health and the governor’s office impacts the heart of day-to-day care for loved ones whose minds and bodies are diminished by the ravages of this fatal brain disease.
Most notably, public health strategies aimed at limiting contact with others is nearly impossible for people living with Alzheimer’s and other dementias, who rely on family caregivers and others to live their daily lives. This reality affects these individuals across all settings, including home, adult day services, residential and assisted living facilities and nursing homes.
“Caring for someone with Alzheimer’s or other dementias is exceptionally demanding,” said Eric VanVlymen, who oversees all of Ohio’s Alzheimer’s Association chapters. “The level of assistance provided by caregivers of people with Alzheimer’s tends to be extensive, compared with caregivers of other older adults, and caregiving responsibilities often persist for many years – even decades.”
To support caregivers during COVID-19, the Alzheimer’s Association offers dozens of virtual caregiver support groups throughout the state, care consultations and education programs that can be accessed via telephone or through online videoconferencing at home. The Association’s 24/7 Helpline at 800.272.3900 provides around-the-clock support.
“These are extremely stressful times that can make caregivers feel lonely and isolated,”” VanVlymen said. “We must stand together as a community and help each other. Our resources are all free and easily available.”
The Impact of Alzheimer’s on African Americans
Terri Littlejohn has been caring for her mother, Dorothy Crane, ever since her mother moved into her home in 2002. Alzheimer’s disease took Terri Littlejohn’s grandmother. Eight siblings of her grandmother – out of a total of 13 kids – had Alzheimer’s. Mrs. Crane also has the disease. “My mother has been living with us 18 years. I’ve been taking care of her as long as she had been taking care of me as a child. Now the roles are reversed and she’s the child,” Littlejohn said.
African Americans are about twice as likely as whites to have Alzheimer’s or another dementia. Even though African Americans are more likely to get Alzheimer’s, studies show that African Americans are less likely to have a diagnosis and when African Americans are diagnosed, they are typically diagnosed in the later stages of the disease, when they are more cognitively and physically impaired.
As soon as her mother was diagnosed in 2008, Day connected with the Alzheimer’s Association. When Day started working with the Association, she realized the importance of the organization and now does what she can to help promote the Association and spread awareness of the disease. She is an Alzheimer’s Association advocate, volunteer and participates in the annual Walk to End Alzheimer’s, which brings together thousands of people united in the fight.
“There is just a huge underrepresentation of people of color (accessing services) and that is just maddening to me,” she said. “You have to have help, if not you will isolate yourself.”
“I think culturally we have always had Uncle Cookie who had dementia. We have wanted to care for them on our own and keep it in the family but that is really hard,” Day said.
Family and Friends Provide Most of the Support
Eighty-three percent of the help provided to older adults in the United States comes from family members, friends or other unpaid caregivers, according to the Alzheimer’s Disease Facts and Figures report. Nearly half of all caregivers (48%) who provide help to older adults do so for someone with Alzheimer’s or another dementia.
Dorothy Crane, 86, has a village surrounding her and providing care. In addition to her daughter Terri Littlejohn, her care team consists of her son-in-law, two granddaughters, two grandsons-in-laws and some great-grandchildren doing whatever is needed 24/7 to make sure she is cared for, loved and living in a stable environment.
“I do basically everything,” Littlejohn said. “Self-care, bathing, I have to pick out her clothes because if not, she will wear the same clothes. She does not cook, and I help with her medication.”
“Being a caregiver, I have struggles with it,” Littlejohn said. “I’ve always had to take care of her. Should I be mad? Should I be angry? Should I be happy? It’s a struggle at times,” she said. “You’ve got to do it out of love so that you won’t be mad, angry or sad. If you do it out of love, it gets easier, but it’s still hard.”
Littlejohn said it hasn’t always been easy. The stress of being responsible for her mother and living up to her own expectations can at times feel unbearable. “I want to be the best caregiver, I want to be the best daughter, I want to be the best,” Littlejohn said. “When I am not, does that mean that it is wrong when you forget to do something?”
Since the spread of the Coronavirus, Littlejohn said everyone who comes into the house has been washing their hands more and keeping their distance so as not to unknowingly make Ms. Crane sick. “That social distancing, we are practicing that in the house. Whenever my nieces come over, they don’t come near her.”
Here are some additional tips for dementia caregivers at home:
- If a person living with dementia shows rapidly increased confusion, contact your health care provider for advice because increased confusion is often the first symptom of an illness.
- Consider placing signs in the bathroom and elsewhere to remind people with dementia to wash their hands with soap for 20 seconds.
- Demonstrate thorough hand-washing. Alcohol-based hand sanitizer with at least 60% alcohol can be a quick alternative to hand-washing if the person with dementia cannot get to a sink or wash his/her hands easily.
- Ask your pharmacist or doctor about filling prescriptions for a greater number of days to reduce trips to the pharmacy
Littlejohn said as a caregiver, “you just have to hold your head up and keep going even though the days and nights get hard. If you are blessed to still have your loved one, that is wonderful. If you don’t, you should be thankful for the time you had with them.”
Alzheimer’s Association Caregiver Support Services
The Alzheimer’s Association in Ohio provides around-the-clock support for individuals dealing with Alzheimer’s disease and other dementias through community-based services, 24/7 Helpline and resources available at alz.org.
24/7 Helpline: 800.272.3900
Individualized Care Consultations: 800.272.3900
Online Educational programs and support groups: Alz.org/crf