Dementia Together focuses on care now instead of waiting for cure

WINDSOR — Instead of waiting for a cure for dementia, the founder of Windsor company Dementia Together figured the best place to start is with educating those around the patient from caregivers to family members — plus, the company aims to help those with dementia live fulfilling, enriched lives.

“As an organization, we are focusing on what we can do right now in the meantime until there are cures for various causes of dementia, so those with cognitive changes can live with lifelong wellbeing,” said Cyndy Hunt Luzinski, MS, RN, founder and executive director of Dementia Together. “We really exist so that no one has to walk the dementia journey alone.”

Approximately 7 million Americans live with dementia, and the number of people with a dementia-related diagnosis is expected to triple by 2050.

Dementia Together, a nonprofit started in 2017, provides “in the meantime” support for care providers and those with dementia consisting primarily of education and enrichment — care providers include family members, those who work for health care and senior care services, and businesses such as restaurants and retails stores that might have clients or customers with cognitive impairments. 

The support can be as simple as communication advice in a list of dementia-friendly tips, further explained to caregiving staff in a short meeting that typically lasts up to one hour. For businesses, the tips are tailored to dementia-friendly customer service. 

“We help families especially learn how to interact with their loved ones in ways that don’t cause anxiety,” Hunt Luzinski said. “Avoid asking direct questions that might put the loved one on the spot. … We don’t contradict. We don’t rush the person with dementia. We may simplify or slow down when we’re talking.”

The tips clarify interactions with those unable to store recent facts and even what happened 30 seconds ago, Hunt Luzinski said. Those with dementia are instead better able to store feelings, she said. 

“I can just choose to be with them in the moment instead of putting them on the spot and expecting them to recall information,” Hunt Luzinski said. “It’s more about feelings than facts and interacting in a way that doesn’t cause anxiety.”

Hunt Luzinski follows the mantra of “contented dementia,” where the person with dementia leads the way and is the expert on what is needed. The care provider opts to show kindness over being right with the correcting and criticizing of errors, but instead allows for feelings, not logic, to be the guide, Hunt Luzinski said. 

Another form of support is the intergenerational virtual and in-person memory café, a social gathering point for people living with dementia and their care partners to play games, listen to music, sing songs, share stories and reminisce according to a weekly theme. There also is a mobile memory café that travels to long-term care communities. 

“It’s a time where people can discover they can have fun together. It doesn’t matter if you don’t remember breakfast,” Hunt Luzinski said. “It really is a time for them to recall happy moments in their life as well.”

Dementia Together’s memory café and other enrichment programs aim to decrease social isolation, a cause of cognitive decline — those who perceive themselves as lonely are twice as likely to develop dementia, Hunt Luzinski said. At the same time, education has been shown to reduce caregiver stress, helping the partners identify the positive aspects of their caregiving and to find more enjoyment in their roles, she said.

“We help fight social isolation for people walking the dementia journey, so they discover they’re not alone,” Hunt Luzinski said. “The hope and joy they find by being part of social gatherings has made a big difference.”

Dementia Friendly provides training for other care facilities, such as Seniors Helping Seniors of Weld County, an in-home senior care brand and the first senior care service in the county to receive the training. Last year, more than half of the caregiving staff underwent the three-day Dementia-Friendly Leader Education course taught by Dementia Together to be able to provide advanced dementia care and support to seniors and to guide their families through the process of caring for someone with dementia.

Seniors Helping Seniors primarily hires seniors to help other seniors with a variety of tasks, enabling them to remain at home, such as personal care, light housekeeping, meal preparation, transportation and companionship. The services include 24-7 care and memory care with cognitive oversight to those with dementia, such as helping with cooking to ensure home safety. Sixty percent of the care the agency provides is in the area of memory care, and the care can be given in homes, assisted living facilities and nursing homes.

“The training they offer to businesses like ours is really to empower staff to gain confidence to provide excellent care,” said Monica Londono, co-owner of Seniors Helping Seniors of Weld County with Sandra Acevedo. “Providing companionship to someone with cognitive issues can be really difficult.”

Memory care services require different tools and abilities to be able to communicate than does the regular care, Londono said.

“The difference is with dementia care you will get to the house of the client and the situation can be completely different,” Londono said. “You have to have training and tools to be able to help the person, to allow you to do what you need to do.”

A growing number of organizations are training their caregiving staff to be more cognizant of communicating more effectively with those with dementia, Londono said.

“I know there is a big push for medications and early detection,” Londono said. “Organizations are pushing to have people tested early on. … Dementia is not curable but with early detection, if the medications are taken, it will slow down the progression of it at a better rate.” 

Hunt Luzinski calls what Dementia Together offers “social prescription.”

“Families are the consumers of homecare and care community assistance, so their expectation of skilled person-centered care will likely drive the industry in the standard of services provided,” Hunt Luzinski said. “Almost everyone knows or will soon know someone living with cognitive changes, so changing the tragedy narrative to one of hope should be the norm, in our opinion, as we increasingly see people living well with purpose and joy, despite cognitive challenges.”

Another trend Hunt Luzinski sees in senior care is a shortage of skilled dementia care staff and companions, not just in Northern Colorado, but across the United States.

“It’s a catch-22 with staff training in an industry known for high turnover rates. Some managers hesitate to invest in dementia education for their staff due to the high turnover rates,” Hunt Luzinski said. “Thankfully, we do have some dedicated, courageous senior professional leaders in Northern Colorado who understand how important it is to invest in dementia education for their staff so their care companions are empowered with strategies for creating well-being versus struggling to cope from crisis to crisis.” 

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