In Indiana, 10.9% of people 65 and older have Alzheimer’s, according to the Alzheimer’s Impact Movement (AIM).
Community outreach associate with the Community Dementia Network Amanda Oporta helps make communities more dementia-friendly, which was started by a larger organization called Dementia Friendly America. She also works with clients who are living with dementia, newly diagnosed with dementia, or care partners who are navigating the diagnosis.
Part of creating dementia-friendly communities starts with the language surrounding the disease. Oporta said that the stigma and fear of Alzheimer’s stems from the fear society has of it.
“It's very important that we begin to shift the language into what is positive so that we all can do better with each other and have better relationships because dementia lasts so long. It's such a long disease process,” she said. “How can we be good care partners with each other rather than taking away the self of someone when they receive the diagnosis.”
AGING IN THE HOME
Dementia-friendliness can also start in the home. Aging in place has become very popular with America’s large older adult population. It’s when someone can age in their own home in their own community.
But aging in place is not an easy task. There are different resources in different communities to help older adults be in the place they want to be as they age, which Oporta said should be figured out now rather than later.
“You want to know what's what's my plan for aging in place now, rather than later, when you do receive a diagnosis that tells you, ‘oh, that's gonna take a lot of my time, my money, and my energy to figure this out,’” she said. “So we want to set that up. So also, our children don't have to guess what our needs are.”
One resource that everyone can have, said Oporta, is a team. She suggests finding 5 close friends, church members, or relatives to be there so that the burden of care doesn’t fall on one individual.
Having people close by to do activities with a person diagnosed with dementia helps slow down the progression of a disease with no cure.
“Sometimes when we close the door, our dementia seems to rapidly progress,” Oporta said.
A team can also check on a person with dementia so that they do not feel isolated, which is also a door-closer.
Part of aging in place is setting up the home for the changes dementia not only does to memory but also vision and motor skills.
People in early dementia stages can have tunnel vision due to peripheral changes. It can cause falls, stubbed toes, and other motor issues.
“What does our home look like? Is it set up in a way that it's safe because with dementia comes falls,” Oporta said.
Oporta wants these changes to be seen in a positive light instead of a negative one.
“We want to look at things that can help us continue with the strengths that we have,” she said. “So what that means is I often hear people say and talk about the losses with dementia. But we're not really talking about the strengths of dementia.”
Changes in the occipital lobe could mean that the lighting in the home is better. Memory issues could mean that things are more labeled in the pantry. Choice issues could mean fewer options to worry about. These changes can help someone be successful in their home.
“And in fact, we can let go of things that we didn't need to worry about before,” Oporta said. “When we're together, we're having fun, right.”
AGING IN THE COMMUNITY
Indiana has tools to help understand the challenges that come with dementia, which will hopefully push the state to be dementia capable.
The difference between dementia-friendly and dementia capable comes down to action. Dementia friendly is more of an awareness campaign, according to Oporta. It’s an awareness that dementia is prevalent and that many people are living with it at home.
Just because someone is living with dementia does not mean they need full-time care or are incapable of living in their own homes.
“There are people who have mild cognitive impairment and/or have not been diagnosed with dementia who are driving and getting back and forth and still working,” Oporta said. “And many of them are successful, and people are not aware of it.”
Making a community dementia friendly also helps people who are nervous to get help due to the stigma that surrounds neurodegenerative diseases such as dementia.
Once communities become aware of dementia needs, Oporta said the next step is to be dementia capable. This can include dementia-friendly training, which is a tool that is used by Dementia Friendly America. Dementia Friends Indiana is licensed to do dementia-friendly training.
AGING WITH BUSINESSES
Businesses can also be dementia-friendly. Dementia Friends Indiana looks at communities around the state to see what the demographics are and what areas could become more dementia-friendly.
Changes in the home can also be applied to businesses and organizations.
There are two levels to Dementia Friendly Businesses. Level one is understanding how dementia impacts the environment. Oporta said these changes can help consumers and businesses who do not have brain changes.
Changes to the environment can be moving someone so that they can be closer to a utility like a bathroom, or moving them to a less noisy area if it is getting overwhelming. It can also be simply focusing on responding to certain situations calmly.
“And so it's just simple things,” Oporta said. “It's simple things like that.”
Level two is seeing changes in the environment. It’s when organizations and businesses make changes internally.
Changes can include making sure the wayfinding is good and lighting is good. People with dementia can have depth perception issues, so businesses might prioritize a non-confusing floor pattern.
“Because when we need to know our way around, this is just going to make it easier for all of us,” Oporta said.
Dementia-friendly business training can be found online for free through the IU School of Public Health.
Organizations like IU Health are making dementia-friendly changes like having training built-in for all employees. Oporta said some of the hospitals in the system have become dementia-friendly and are starting to work on level two efforts with their interiors.
CARE PARTNERS
Oporta recognizes that these changes are easier said than done.
“It's not easy,” she said. “It takes a whole lot of planning on the front end, and things are always changing. And so it's so important to really find those resources.”
In the South/Central Indiana region, there are resources like the Alzheimer's and Dementia Resource Service and regional centers on aging. She encourages people to use these resources because it’s normal to not remember the next step.
“And you really do need a coach, you need somebody to kind of help you through that, and then hold you accountable to those next steps,” Oporta said. “Because you're going to forget, you've got so much on your plate you're gonna forget. And it's normal. That's normal forgetting”
The Alzheimer’s Association has a 24-hour hotline that can be used by someone with dementia or a care partner.
Oporta stressed to lean on your team when things get rough and to use resources now as a preventative measure because aging is inevitable.
