Market rises to meet aging Boomers

Memory care offers services for various stages of need

Friday, May 14, 2021, Vol. 45, No. 20
By Catherine Mayhew

Julia “Pudge” High was the life of the party. She was voted “wittiest” before her graduation from Coffee High School in Florence, Alabama, in 1959.

A former nurse who became a stay-at-home mother, Pudge was the kind of person who just knew how to reach out to people in need and help them in exactly the way they needed it.

“My mom was bigger than life,” says her daughter, also Julia. “She was hilarious. Very loyal to her friends. She was taking care of people a lot. She was the person who knew that the best thing you could do to help a family in crisis was to drop off food and leave.”

The day her daughter moved Pudge to assisted living – her memory was failing in spectacular fashion as she dealt with other life-threatening illnesses – was tough on both of them. Pudge had lost the final skirmish in her epic battle to maintain control. And Julia was now the parent to her own mother.

“The day I moved my mother from her condo to assisted living, she started sobbing because she couldn’t feed her birds anymore,” Julia recalls.

It was a small consolation that all the rooms at Fountains of Franklin, where Pudge moved, overlooked beautiful gardens. Beautiful gardens where Pudge could see the birds.

Memory care options

Sometimes it begins with a pile of unpaid bills. Other times it’s the 10 jars of dried oregano in the pantry. Is it forgetfulness or an early sign of memory loss? Most families of those who suffer from Alzheimer’s or other dementias can look back and pinpoint exactly when they started to notice something was just off with a parent.

As the bubble of Baby Boomers ages, the number of Americans suffering from Alzheimer’s and other memory loss diseases is growing. The Alzheimer’s Association estimates that 6.2 million of those 65 and older suffer from Alzheimer’s. Almost two-thirds are women. Black and Hispanic Americans suffer disproportionally. By 2050, the association projects 12.7 million Americans will suffer clinical memory loss unless there’s a medical breakthrough or cure.

Fortunately, the options for caring for those with memory loss is also growing. Seniors Housing Business magazine reports the number of memory care units grew 55% from 2013 to 2018.

Those options range from day services for those in the early stages of the disease to assisted living and, finally, end-of-life care. The first two options can slow the progression of the disease but, in the end, there is no cure.

And costs range from affordable to almost staggering, depending which type of care a relative requires. Many day-service facilities charge less than $100 a day for a full range of services. Once full-time care is required, that cost skyrockets to more than $4,000 a month. And more bad news. Generally, Medicare will pay for medical care a facility provides but not for the room, board and personal care needed. Long-term care insurance can help a great deal.

Day services

For people in the early stages of memory loss, day services provide both a stimulating atmosphere that can slow the progression of the disease and a welcome respite for caregivers.

“Programs like ours are such a valuable option for caregivers who want to keep their loved ones at home as long as they can,” says Courtney Robinson, the program manager for FiftyForward’s Adult Day Services in Nashville.

“Our goal is to provide top-notch services, but our other goal is to care for those caregivers. Caregiving is a 24-hour-a-day job. Our program allows those caregivers to get some respite. It’s brave for caregivers to say I need support, too.”

Shelia Baker, 57, gets some shuffleboard pointers from Daniel Christian, activity director at FiftyForward’s adult day service at the Knowles Center in Nashville.

-- Photo By Michelle Morrow |The Ledger

Clients pay $65 a day, and some pay nothing due to a grant from the state.

The program is designed to stimulate memory skills in an engaging way. The day includes breakfast and a morning orientation to the day that may include celebrating a birthday or discussing current events. Participants then enjoy music, arts and crafts and appropriate exercise before lunch. Activities continue in the afternoon. “It’s a full day,” Robinson says. “It’s a lot of fun.”

The program is not in a locked facility, so participants have to meet criteria to ensure their safety. But Robinson finds that a structured day away from home is beneficial.

“I find coming to a program like this our clients experience provides such better outcomes than they would if they were at home just watching TV or sleeping. Our program offers such a big bang for the buck.”

In Knoxville, many families who care for early dementia relatives rely on the Concord Adult Day Enrichment Services program, more commonly just referred to as CADES.

Like the FiftyForward program, CADES, which costs $71 a day, is designed to enhance memory skills while helping clients maintain as much independence as possible.

“We start in the morning with somewhat passive activities because getting people there can be confusing and energy sucking,” says Celia Gruzalski, the executive director. “We want to make sure we’re not rushing them. We do coffee, we read the paper. Then we move into reading, trivia, devotions.

“We try to make music a big part of our program. With dementia, music is stored in a different place in the brain and even when people are nonverbal they can still sing and remember lyrics.”

Lunch is an important time for staff and clients to eat together.

“Everything we do is intentional and with purpose,” she adds. “Sometimes people forget which utensil to use, and we can model that behavior for them. It helps to eat in a group. It encourages good nutrition and consumption. And it’s an area where we can identify if they’re having swallowing issues and we can communicate that to their families.”

CADES also offers exercise and encourages clients to choose their options.

“We have seated exercise options. We have yoga. We have an adapted exercise room with equipment that’s safe for people who are elderly or frail. It’s an area where they can be independent. We want everyone to feel as though they can choose activities independently.”

Unlike long-term caregivers, the staff at CADES meets clients where they are and not where they were before their diagnosis.

“When we meet our participants we get to meet them at that moment in their lives,” Gruzalski says. “We don’t have any memories of what they used to be. I think that’s one of the gifts of providing day services. We’re able to bring a blank slate kind of and no anger or hurt at the loss of who they used to be.

“We also know because they came here, we made their lives so much better. All of the people who come here recognize there’s a reason they’re here. It’s our purpose and mission to give them that gift.”

Long-term care

Ray Moore, 82, plays cornhole during game day at the FiftyForward Knowles Center in Nashville. Courtney Robinson cheers him on.

-- Photo By Michelle Morrow |The Ledger

Sadly, day services were never an option for Pudge High.

For a time, her daughter had devised a workable schedule in which Pudge stayed with her family on weekends and had a caregiver at home during the week.

But after suffering a massive heart attack and stroke on top of the dementia, her doctors told her it was no longer safe to stay in her home.

Pudge and Julia toured several assisted living and memory care facilities.

“We let her pick,” Julia says. “She went to Fountains of Franklin. They have a philosophy of giving them as much independence as they can. It’s not antiseptic, and children feel comfortable there.

“She was there three years and she kept declining. And then she had another stroke. She kept losing weight. And her memory was getting worse.”

AARP lists several factors to help caregivers determine if the time is right for full-time memory care:

• Is a person a danger to themselves or others?

• Can caregivers adequately perform the physical functions of caring for a loved one?

• Are caregivers neglecting their own well-being?

“What I can offer to someone who is making that choice to place their mom and dad in a memory care unit is to go there first, have a tour, talk to the staff, ask them about their programs and their menus,” explains Lesa Scott, vice president of resident services and programs for Spring Hills Senior Communities. She also is a registered nurse and a certified dementia practitioner.

“Really know before they make the decision. Do your homework first.”

Scott says the signs of dementia can be obvious if family members live with a person.

“But if the family lives out of state it’s a lot more difficult,” she acknowledges. “They tend to see the mom or dad as they remember them. Also, the mom or dad can probably talk a good game. They could fake it, for lack of better words.”

Activity Director Daniel Christian, left, helps Marilyn Buntin, 69, with shuffleboard during game day at the Knowles Center.

-- Photo By Michelle Morrow |The Ledger

She also recommends having those frank discussions before the situation becomes an emergency.

“If it’s anything like my mom, she’d say what’s wrong with you – you’re crazy. It’s not an easy conversation to have, Scott says. “I recommend to people that they talk to parents while they’re still good. Say ‘Mom or dad, if you start forgetting things and you need help how would you want me to handle that?’ That’s the most ideal way because then when it happens you know you’re doing the right thing.”

The levels of memory care vary. Many assisted living facilities have designated memory care units. There are also stand-alone units. Both provide safe, structured environments and help residents not only with activities but also provide personal care. Staff are trained to interact with dementia patients appropriately.

“They need to know how to de-escalate some behaviors and how to interact with someone with dementia on their level,” Scott explains. “Not to try to make this person do what you want them to do. We really have to allow them to navigate, to follow their lead.”

Spring Hills uses a care flower system devised by Scott to emphasize positivity. The five flowers – a rose, iris, daisy, morning glory and violet – identify personality types to let the staff interact with them appropriately.

“We have the rose, for example. A rose is someone who needs to know what’s going on. They like to take charge. They are strong-willed people. We tell our caregivers that to take care of them you have to inform, they need to know who’s in charge.”

Even with a loved one in a secure facility, the toll on family caregivers doesn’t end.

“It’s an honor and a gift,” says Julia High of caring for her mother. “When you’re an adult caring for a parent it’s the hardest thing you’ll ever do. It’s harder than raising a child. When I cared for my mother, it was very poignant to have to become her mother. And she didn’t like it at all.

“Strong-willed women don’t like giving up control. They’re not mad at you, they’re mad at their disease. It can bring out the best in them or the worst in them. It’s comparable to when a tired toddler hits you because they trust you. They feel it’s safe to express their anger. That happens a lot of with dementia. And the longer the process takes the harder it gets.”

The last dance

Now comes the thorny question. How much does all this specialized care cost?

Generally, it ranges from about $3,000 a month to $7,000 a month, depending on the level of care. Most families have to pay out of pocket unless the patient purchased long-term care insurance. Veterans and their spouses over age 65 can access care through their benefits.

Pudge High had planned ahead and bought long-term care insurance. Her dementia worsened at Fountains and she was moved to the facility’s hospice wing where she spent the last 11 weeks of her life.

“Her brain was going out like a candle,” Julia recalls. “We watched it extinguish. And she went in and out of it from one world to another. She saw angels and dead relatives. The hour glass is in front of you and you can see the grains going out.”

Pudge had been very close to her only granddaughter – Julia’s daughter, Mary Eloise. And throughout Pudge’s long illness, Julia was very aware that she didn’t want Mary Eloise’s last memory of her grandmother to be a jarring one of decay.

Like so many dementia patients, music was one of the lasting comforts as the disease progressed and Julia played it for Pudge often.

“My daughter’s last memory of my mother was her dancing to Chain of Fools.”