Susan Albers is tired of dancing around the issue, and Reilly Huelsmann said compassion training is needed.
Albers, executive director of Bloom at Kokomo Senior Living, and Huelsmann, Alzheimer’s Association Greater Indiana Chapter program manager, are among those working to bring awareness and understanding about dementia.
Training should be available to everyone, from frontline workers and public officials, to families of those diagnosed with the disease, according to Albers.
“It’s such a mysterious disease that people don’t know how to respond,” she said. “There is a ton of denial, but it needs to be addressed. It doesn’t have to be some big, scary disease. It needs to be faced.”
Alzheimer’s disease versus dementia
Dementia and Alzheimer’s disease, while often used interchangeably, are not the same thing.
Dementia is an acquired condition in which people begin to decline cognitively and functionally, according to Dr. Liana Apostolova, a neurologist at IU Health Physicians Neurology in Indianapolis.
Cognitive decline impacts memory, attention and language while functional impacts the ability people have to do things they were able to do before, such as driving, cooking or managing finances.
Apostolova both sees patients and works in Alzheimer’s disease research. Her research focuses on early-onset Alzheimer’s disease.
“Dementia is like a runny nose, but the runny nose could be from allergies versus a cold,” she said. “Alzheimer’s is one of the reasons a patient could have dementia, but it’s not the only cause of dementia.”
Alzheimer’s is a type of dementia that affects memory, thinking and behavior. It’s a progressive, terminal illness, Apostolova said.
While numbers and statistics vary among organizations, Huelsmann said in an email that Alzheimer’s accounts for 60% to 80% of dementia cases.
Once dementia becomes a global disease, the body loses brain cells all over, Dr. Braca Cantor, a geriatrician at Touchpoint Healthy Aging Transition Services (HATS) in Noblesville, said. Eventually a patient won’t be able to use the bathroom or eat without assistance.
“In the final stages, even swallowing is perilous,” Cantor said. “One of the most common ways to die from Alzheimer’s is aspirating just on saliva.”
There isn’t a single cause of Alzheimer’s disease, but the biggest risk factor is age, followed by family history, genetics and other risk factors such as unhealthy aging, head injury and poor heart health, according to the Alzheimer’s Association.
Because genetics are a component of the disease, there is a lot of conversation around Alzheimer’s being an inherited condition. Apostolova said only 3% to 5% of Alzheimer’s cases are running in families generation to generation.
“That’s very rare and these families with that multigenerational affected individuals in their young, mid-life ages, because these forms of Alzheimer’s hit young,” she said. “They’re very, very rare.”
Treatment and denial
But in the meantime, treatment for dementia and Alzheimer’s is difficult and multifaceted, Cantor said. The FDA-approved medications for Alzheimer’s are Aricept, Exelon and Razadyne, all of which treat symptoms but do not reverse the progress of the disease, Cantor said. There are promising studies in the works, but none that show promise of reversing Alzheimer’s.
“Medications are very, very minimally helpful,” she said. “ ... We don’t have anything close to (a cure) in the pipeline.”
Cantor said that she works with caretakers just as much as patients to create and maintain routines incorporating exercise, good nutrition and some kind of cognitive stimulation every day that will help patients continue to function.
Education is crucial for caretakers, and helps them understand and prepare for their loved one’s decline in cognition. Cantor, who also has a social worker that provides caretaker counseling, works with families to make a plan or connect them with resources for late-stage disease planning regarding decision-making and palliative care.
Another part of Cantor’s job is recognizing when it’s time for a patient to move out of the family home and into assisted living. Stressful living situations with an overwhelmed caretaker is a major risk factor for elder abuse.
Preparation and education means nothing when denial is keeping patients, spouses or children from seeking help due to denial.
Albers sees this issue often. Sometimes spouses will compensate for their sick loved one, and children and others are left in the dark.
“One will jump in for another and protect them verbally, physically, doing things for them, speaking for them,” she said. “It’s so subtle and they’ve been doing it for so long it becomes natural. So when (children) are finally exposed to that individual, it’s like a big reveal.”
For instance, if the “protector” spouse dies, a child might suddenly be facing the reality of their parent’s illness and be way in over their head, she said.
Samaritan Caregivers, a nonprofit that serves Howard County residents age 65 and older who are living independently, is a service that provides “a little help” to those who need it. Volunteers take groceries to residents’ homes, transport them to and from medical appointments and offer Medicare counseling, wellness calls and more.
Jamey Henderson, executive director of Samaritan Caregivers, said that while the nonprofit’s goal is to help people live independently as long as they can, sometimes it’s clear that is no longer safe for the person, or their loved ones.
“(In those situations) we’re really encouraging caregivers, or adult children, to get help,” she said. “We want them to reach out for help and not be embarrassed by their family member’s issue. We see so many adult children and spouses who are in denial.”
Henderson said there are times when Caregivers volunteers and staff do talk with loved ones, encouraging them to be candid with a family doctor about how their ill relative is doing.
When it’s time to seek assisted living for dementia-related issues, Albers said memory care is crucial. Her passion for memory care and advocacy stems from her time as executive director of Indiana Assisted Living Association from 2000-06.
Bloom’s memory care unit consists of two floors with 33 units. The first floor caters more toward patients whose dementia impacts them less, and they’re more involved and social. Second-floor residents are typically at a higher level of care.
Albers said that as a practice, Bloom doesn’t like to separate their memory care patients or stereotype them. However, the benefit of splitting the levels between floors by need allows for even more individualized care.
A psychiatric group comes in to work with the memory unit that provides support for the residents so they have both medical and mental care.
“It’s like speaking a different language, living in a different country, in a different dimension, with a different body,” she said. “Everything is foreign.”
Albers said one of the biggest challenges that families face is understanding that “the whole thing has changed.”
“People lose (family members) and it’s not the same person,” she said. “It’s not just trying to communicate, understand and be patient. There’s anger, you go through all the stages of grief. They call it the long goodbye, because it’s just so foreign.”
A caring community
Many organizations, like Samaritan Caregivers, work to help seniors who are aging on their own.
On April 14, the Kokomo-Howard County Public Library South Branch hosted a Virtual Dementia Tour, which is a sensitivity training program. Developed by P.K. Beville through the nonprofit he founded, Second Wind Dreams, the tour creates a “scientifically-proven method of greater understanding of dementia through the use of patented sensory tools and instruction,” according to secondwind.org.
Participants are given altered sunglasses that make sight difficult, spiked insoles for their shoes, gloves in which the pointer and middle fingers are stitched together and headphones featuring a mixture of music, static and mumbled conversation. They are then asked to complete simple tasks, such as setting a clock to a specific time and placing pills into a container.
Staff at KHCPL are trained to conduct the tour, and the April session was completely booked. There was a waiting list for the next tour.
In addition to hosting the Virtual Dementia Tour, the library hosts Memory Cafes, which allow caregivers and the person with dementia to socialize with others, usually with a guest speaker or other activities, Robin Reef, KHCPL Senior Services Coordinator, said.
Reef, who sat with participants after the Dementia Tour to debrief them, said that library services such as book delivery mean a lot to homebound patrons, and that means a lot to her.
“They’ll send me notes and say, ‘This service is great, it’s saved my life,’” she said. “And they’re not being trite.”
The library also offers Experience Kits, which can be a wide range of items such as games, karaoke or baking kits that can be checked out by any patron. Four of the kits are Dementia Experience Kits, with picture books that are tailored for those who like dogs, cats or dolls.
Services like these are important to patients struggling with dementia. Cantor, Apostolova and Albers agreed that isolation and lack of stimulation is a recipe for a rapid decline.
“One of the worst things you can do for a person who is aging is isolate them,” Albers said. “Socialization is what keeps them active; it keeps them healthier.”
Albers said that the more conversation surrounding dementia, the better. She said compassion training for frontline workers, public officials and conversation will help erode the stigma.
The Alzheimer’s Association also hopes to see increased dementia training for first responders, and is encouraged by the passage of HB1177 on April 8, Huelsmann said in an email. The legislation requires the Indiana Family & Social Services Administration Division of Aging to develop a strategic dementia plan.
Huelsmann said the public needs to work to reduce the stigma surrounding Alzheimer’s and dementia. Many people experience changes in relationships post-diagnosis, in part due to the lack of public awareness and understanding of the disease.
More conversations might give family members and loved ones the support they need to address a parent or loved one who has become a danger to themselves or others while living alone, as if dementia is not impacting their lives.
For local organizations such as Samaritan Caregivers, providing local assistance and helping seniors live at home is the goal, but when it’s no longer a good option, communicating that is delicate. Increased public awareness and training might allow family members and loved ones to have courage to know when it’s time for a change.
“We are heartbroken over people who are clearly a danger to themselves and others who continue to live alone as if they are okay,” she said. “Everyone is just dancing around this huge elephant in the room and there’s not anything that we can actually say in most cases that can impact that.”