This article is part of State of Health, a series about how Michigan communities are rising to address health challenges. It is made possible with funding from the Michigan Health Endowment Fund.
Emma*, an elder who had developed symptoms of dementia, had been living with her family. Her family lacked the skills necessary to deal with her symptoms, and as a result, they neglected her care. When Emma's dementia symptoms worsened, her family dropped her off at a local homeless shelter with a few of her belongings and no identifying paperwork. By this time, her dementia symptoms required 24-hour supervision, so she could not stay at the shelter.
Fortunately for Emma, staff from
Region 2 Area Agency on Aging (R2AAA)'s Safe Haven program helped her get admitted to a skilled nursing facility.
"A lot of times, there's multiple types of abuse. It might be a neglect and an exploitation situation or multiple harm types going on with the case," says Angela Shepherd, R2AAA elder abuse victims specialist program manager. "We know that elder abuse is underreported in general."
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Angela Shepherd.
When we think about elder abuse, images of elders being physically attacked, emotionally or sexually abused, or swindled out of their money come to mind. But elder abuse often takes the form of neglect, a caregiver's failure to provide an older adult with life's necessities: food, clothing, shelter, or medical care. Risks for elder abuse increase when an older adult is isolated, physically or mentally frail, or depends on others for care. Having a caregiver, family members, or friends who live with substance use disorders or mental illness can raise those risks even more.
According to the
National Council on Aging, approximately
one in 10 Americans aged 60 and above have experienced some form of elder abuse — and
only one in 24 cases of abuse are reported to authorities. Cynthia Farrell, adult services program manager with the Michigan Department of Health and Human Services (MDHHS), says most of Michigan's elder abuse cases are related to neglect. From October 1, 2020, to September 30, 2021, MDHHS received 5,566 reports of elder neglect – most of them self-neglect, but 1,720 involving neglect by caregivers. By comparison, there were 872 reports of financial exploitation and 540 reports of physical abuse.
The
Michigan Elder Justice Initiative notes that neglect is more likely when in-home or institutional caregivers feel overwhelmed or don't have enough time to complete needed care. The MDHHS numbers only reflect elder neglect happening in the home.
"When you have somebody that needs 24/7 care supervision, that can really take a toll on family members,” Shepherd says. “They may not really notice that neglect is happening or that care is not being provided adequately. There's also the aspect of the family caregiver not always having any type of training."
When an elder is neglected, they may miss meals, important medications, and opportunities for much-needed physical activity. If they lack mobility skills, neglected elders may experience further physical decline as well as pressure sores. Elder neglect often brings isolation and loneliness, which
research has linked to high blood pressure, heart disease, obesity, a weakened immune system, anxiety, depression, cognitive decline, Alzheimer's disease, and even death.
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Cynthia Farrell.
"Neglect can impact vulnerable adults in multiple ways," Farrell says. "There could be a lack of proper hygiene or missed medical appointments. They could encounter a lack of proper nutrition. Just one thing could impact another and cause health issues."
Serving Jackson, Lenawee, and Hillsdale counties, Safe Haven provides safe, temporary housing for people over 55 years old (or adults under 55 who are disabled) who are experiencing abuse, neglect, or exploitation.
"We do consider neglect to be a form of elder abuse. And for the purposes of our Safe Haven program, which serves victims of elder abuse, we do consider that to be something that would qualify them for our services," Shepherd says. "When you have a vulnerable adult who needs day-to-day care, who depends on somebody else for that care, if the person in charge of that care is not properly doing that job, it potentially puts the vulnerable adult in an unsafe situation. … They could experience malnutrition or dehydration issues and all sorts of psychological symptoms, distress, depression, and anxiety."
Elder neglect may not be intentional. Family caregivers may lack the skills needed to provide complicated care. They may feel embarrassed when that care involves bathing, toileting, and diaper changes. If they are also taking care of children or working outside of the home, they may simply not have enough time to provide adequate care. And if they are responsible for care 24 hours a day, seven days a week, they may experience burnout.
"Neglect can get a little blurry," says Kara Lorenz-Goings, R2AAA assistant director. "If there's some caregiver burnout, a caregiver maybe doesn't notice that the person's getting dirty, not cared for well. Because they have their own burnout, they have blinders on."
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Kara Lorenz-Goings.
"If someone is experiencing caregiver burnout, they might not even be taking care of themselves at that point," Shepherd adds. "While we have our Safe Haven program here that really supports people who are being abused, neglected, or exploited, our Area Agency on Aging also offers resources and classes."
Resources include connections to community resources, help with navigating Medicare, connections to support groups, and
Trualta, a virtual platform that offers family caregivers training in providing home care. R2AAA also offers workshops for caregivers. "Powerful Tools for Caregivers" shares how to reduce stress; relax; make tough decisions; reduce guilt, anger, and depression; and communicate with family, providers, and care staff. "Developing Dementia Dexterity" helps caregivers understand the effects of dementia and how to create a positive caregiving environment, redirect challenging behavior, and provide meaningful daily activities. A caregiver who completed this class shared the following story with R2AAA staff.
Living with and caring for his father with dementia, Eliot* wasn't sure how to help him with dressing and bathing. Although his sister, Liz*, lived nearby, she didn't have these skills either. As a result, their father, at one point, was wearing seven layers of clothing. Using tips and strategies learned in the class, Eliot and Liz were able to get their dad undressed, showered, and dressed in freshly laundered clothes.
"Dad grinned ear to ear and asked, 'So, where are we going?'" Liz says. "I got a lot of helpful information and it has made a big difference for my brother and I and our father. It has helped us be less frustrated and make our time together more productive and enjoyable."
R2AAA also offers "Creating Confident Caregivers," an MDHHS class for people taking care of loved ones with dementia or Alzheimer's. Many of Michigan's other
16 Area Agencies on Aging offer this class in their counties, as well.
"Through the Area Agencies on Aging, they can learn about how to be a caregiver. A lot of times, the neglect is due to lack of understanding from the caregiver, or they become overwhelmed by the amount of care that they have to provide," Farrell says. "There's also funding available for the person to get someone to watch the person they're caring for so they can attend the class. We do try to make referrals so that people know about that resource. We also tell them to ask their home health nurse, [occupational therapist], or [physical therapist] to make sure they understand how to perform the tasks that they're asked to do."
Farrell notes that the majority of elder neglect cases actually entail self-neglect, which is more difficult to tackle. These elders usually neglect to address their own physical, medical, or financial needs because they are unable to do so independently. The only way to get help to older adults suffering from self-neglect is if friends, neighbors, medical staff, clergy, or others who have contact with them report the situation. A simple call to (855) 444-3911 can alert Adult Protective Services of elder abuse, neglect, or self-neglect 24 hours a day, seven days a week.
"Adult Protective Services, or even the Area Agencies on Aging, may seem like a scary thing to a caregiver, but they are just there to help," Shepherd says. "If Adult Protective Services comes in, they're not going to want to rip someone out of their home. They just want to offer support services to help people stay in the community where they want to live with their caregivers."
*Names changed to protect confidentiality.
Estelle Slootmaker is a working writer focusing on journalism, book editing, communications, poetry, and children's books. You can contact her at [email protected] or www.constellations.biz.
Cynthia Farrell photo courtesy of Cynthia Farrell. All other photos by Doug Coombe.