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Living with Dementia: Creatively meeting an increasing need

Retirement is synonymous with the carefree “Golden Years.” But for the 50 million people worldwide diagnosed with dementia, those carefree years are replaced with concerns about today and all the tomorrows that follow – not just for individuals with dementia, but also for their caregivers and family members.

Dementia is the abnormal deterioration in cognitive ability, which affects memory, thought processes and performing everyday tasks. The most common form of dementia, found in more than 50% of cases, is Alzheimer’s. The Alzheimer’s Association describes it as a degenerative brain disease that is caused by complex brain changes following cell damage that progressively gets worse with time. An early Alzheimer’s indicator is the inability to retain newly acquired information because the disease typically impacts the part of the brain associated with short-term memory retention. Delusions, or holding firmly to a belief that is not real, may occur in middle- to late-stage Alzheimer’s.

Vascular, Lewy body, frontotemporal and mixed account for the other forms of dementia; with mixed dementia showing symptoms across the other types. Dementia also can be a symptom in diseases such as Parkinson’s, Huntington’s and Creutzfeldt-Jakob. Hypothyroidism, urinary tract infections and normal pressure hydrocephalus can mimic dementia symptoms.

As St. Louis’ population ages (the 2014 Census showed St. Louis with the eighth highest percentage of older people in the country, 6% of which were diagnosed with dementia), the need for appropriate care increases. Fortunately, West St. Louis County offers a range of options for families who need help caring for a loved one.

In fact, the area technically overbuilt, but not for long.

The Mid-East Area Agency on Aging estimates that by 2030, 70 million Americans will be 65 years of age or older. In the next three decades, the senior population will jump 77%. And, according to Barth Holohan, president and co-founder of Family Partners, “About 50% of people over 85 years old have some form of memory impairment.”

Meeting the need

Holohan, who holds a master’s degree in social work from Washington University with a concentration in gerontology, said he has spent the last 20 years dedicated to home care and geriatric care management with special interest in the memory care population. The result of his research has led him to develop a unique model of memory care living.

“Our homes are designed for the people who actually live in them,” said Holohan, president of Family Partners, which began as an Adult Day Service Center in Des Peres, co-founded with Mark Tamboli.

In 2017, Family Partners opened its first home in Manchester. This year, the company broke ground for the first of three additional homes located on over 3 acres in a different quadrant of the city. The plans were for the completion of the 7,000-square-foot home by October of this year. COVID-19 had other plans. Now slated for a spring 2021 completion, the home will include outdoor living space, a four-season room and private rooms for 12 residents. But what makes it unique is what it is lacking – no private bathrooms and no mirrors.

“Family members often assume a private bathroom within a bedroom is preferable,” explained Holohan. “But that doesn’t reflect a person with dementia’s previous experience. Also, a hallway bathroom gives residents a reason to leave their room and interact with others as they would in their own home.”

As for mirrors, Holohan said, “In our adult day center, we noticed people getting agitated when they didn’t recognize their face in a mirror. There is no value in including features that detract from their contentment.”

Research, including a study published in the North American Journal of Medical Sciences titled “Neurodegeneration and Mirror Image Agnosia,” bears out Holohan’s observation. Typically, associated with the later stages of dementia, the inability to recognize oneself in a mirror can lead to confusion and distress.

According to the Alzheimer’s Association, individuals with advanced dementia “may become upset when looking at themselves in the mirror or think there are strangers in the house.” Others may see the image as someone familiar and engage in conversations with their silent reflection.

Neighborhood concept

While Family Partners’ single-family home concept is new, the company is not the first to recognize the value of the neighborhood setting.

Back in 2004, Creve Coeur-based Parc Provence was among the first to approach memory care as a neighborhood concept.

The company serves both the assisted living and skilled nursing communities, offering a full continuum of memory care.

Its residents live in specially designed suites within a household environment on a central campus. Each household includes a kitchen, living room, dining room, private laundry room, back porch and outdoor courtyard.

“We are designed to meet the needs based on cognitive impairment,” explained Kathy Aragon, who oversees Parc Provence’s day-to-day operations. “We offer five homes (or levels) of care. Residents do much better with others at same level of cognitive impairment.”

To more accurately assist its residents, Parc Provence uses the Allen Cognitive Level Screen (ACLS), which evaluates the ability of someone to make decisions, function independently, safely perform basic skills, and learn new abilities. First published in 1985, the assessment was developed by Claudia K. Allen and colleagues and is modified as new scientific discoveries are made. Aragon explained that competency in completing tasks might range from higher level elementary school age (up to age 10), down to mid-stage toddler or infant stage requiring full-time care.

Each resident is evaluated annually, but action is taken if there is a sudden increase in impairment. Self-isolation is a big indicator.

“Our residents thrive through the activities that have been adapted for each (cognitive) level,” Aragon explained. The care the company provides addresses all the senses – touch, feel, smell and taste.

It also builds on the stories shared by families of each resident’s life. “When you build the relationship with your resident and their family, you hear their stories. You plan the care and honor each resident as an individual person, understanding their background interests and cultural beliefs.”

Part of honoring each resident is making care feel more like home. To that end, Cape Albeon Lakeside Retirement Living recently broke ground on its new memory care apartments homes, known as The Cove.

“(The Cove) is an extension of the assisted care facility,” explained Lisa Gilbreth, resident care director. She noted that one of the challenges for families and residents alike occurs when assisted living looks like a nursing home. The Cove, she said, will not.

Gilbreth said Cape Albeon has seen a trend of younger residents needing memory assistance.

While dementia is widely thought of as an “old person’s disease,” early onset, also known as younger-onset, accounts for nearly 200,000 cases of Alzheimer’s in the U.S., according to the Alzheimer’s Association.

“We are seeing younger people, 50s and 60s, getting sicker and having more health issues,” said Kalie Henthorn, Cape Albeon residency counselor, who also assists with marketing, sales and admissions. “With their own social calendar (unique to their housing environment), the residents come out of their shell, which improves their brain stimulation.”

According to Holohan, “Stimulation can add a year or two to (a person’s) life and increase their ability to remain independent.”

Aragon said between three and five Parc Provence residents fall under the younger onset at any given time.

In either scenario – early onset or later – the greatest challenge is knowing when to get help and being willing to do so.

“One of the biggest obstacles involves the family dynamic. Making mom or dad happy rather than doing what’s best for them,” said Henthorn.

Normal aging vs. dementia

To decide if intervention is necessary, there needs to be an understanding if the cognitive decline is a normal result of aging, a medical condition or due to the onset or progression of dementia.

The National Institute on Aging makes the distinction between normal mild cognitive impairment (MCI) and dementia.

In MCI, older adults may miss a monthly bill payment, cannot find the correct word to complete a thought and will misplace things from time-to-time. With dementia, the individuals have poor decision-making skills, cannot manage bill payments, misplace and misfile items and unable to retrieve them, and unable to hold a coherent conversation. Left unchecked and unmonitored, it can lead to accidental harm to self or others, financial compromise and legal complications When a senior is deemed mentally incompetent, they can no longer execute legal documents, such as long-term care, power of attorney and end of life directives.

“This is the one disease families can be in denial,” Holohan said. “There is tremendous guilt for families. People don’t want to admit their loved one needs help. If a loved one has concerns, it’s probably best to address it. Instead, they wait for a disaster and are often left with no choices.”

Aragon said she understands that the decision to place a family member in a care facility is a difficult decision, especially during a pandemic. But she said, “You have to make sure they are safe. It’s hard, but in the end, that’s what’s best.”

She cautioned that emergencies can force a family’s hand.

“Following a car accident or medical emergency, you (may) have to make a decision for them not to live independently. It’s best not to have to make that critical decision in a quick three-day period,” Aragon advised.

Holohan also noted that resistance can come from the individual displaying symptoms, who might “be with it more than they aren’t and who can’t or won’t admit they need help.”

“They self-direct into deterioration,” he said. “If they needed dialysis or cancer treatment, you’d get them help. This is a disease too, just in their brain.”

Without intervention, people are left to “self-destruct,” he said. “I feel there’s a tremendous demand in creating small homes for long term potential that have services that allow people to receive the continuum of care they need.”

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