Dementia care: when staying home is no longer an option

Eight years ago, with her mother diagnosed with Alzheimer's and her father in worsening health because of stress, Kae Hammond went searching for a new home for both parents, a place that could care for them more than she could on her own.

Hammond made some calls and arranged to see five homes in person. The first one struck Hammond as a poor fit for her style-continuous mother, Shirley. The Indio home's dark interior and leather living-room furniture weren't surroundings that would put Shirley at ease.

After seeing the other homes, a friend who went along with Hammond brought up the home with the leather furniture. "I'm not sure you realize how comfortable you were in that home with the staff and the owner," she said.

Hammond realized her friend was right and decided to move her parents into the house. While her father died a few months later, Shirley, now 86, has never complained about the furniture.

On move-in day, Hammond expected her mother to be shocked when she saw some of her own furniture in the new bedroom. Instead, she saw her one-of-a-kind handmade quilt on the bed and quipped to her husband about having the same one at home.

“What that told me was one, it doesn’t matter as long as it’s clean (and) it’s appropriate quality of care,” Hammond says. “It also told me in my mother’s safe environment in her home, we perceived her to be more capable and aware than she really was.”

Hammond now tells this story to clients. Her business, Dementia Help Center, advises families where a person has been diagnosed with dementia about home placement options. Her book, Pathways, is a resource and tip sheet for families.

“If you had a conversation with 10 people who put someone into care," Hammond says, “nine of them would say ‘I waited too long.’”

Often something happens — an emergency or crisis point — that convinces a family to move a person with dementia into a care facility.

For Gail Lansbury it happened when she found her husband, Bruce, outside in the middle of the night wandering down their La Quinta street lost and naked. She settled on Caleo Bay, an assisted-living center specializing in Alzheimer's care, not far from their home.

Up to that point, caregivers had come to their home for a few hours, first three days a week then five. They helped Gail care for Bruce, now 86, a former television writer and producer suffering from Alzheimer's disease, the most common type of dementia in older adults.

"I went through cancer. I went through all kids of stuff," Gail, 73, says. "But placing him was the hardest thing I've done in my life."

People who have made the same decision often say the same thing. The idea of moving a family member, usually a spouse or parent, out of a home and into the care of strangers can create feelings of abandonment. Money inevitably plays a role, and the decision about what kind of care to choose can be overwhelming.

In 2014, about 9 million people in the United States lived in one of about 67,000 long-term care facilities, according to a report released by the Centers for Disease Control and Prevention. More than one in ten nursing homes or residential care centers had units specializing in dementia care, and while few nursing homes only served dementia patients, 10 percent of residential care centers did.

Dementia patients made up a large percentage of the users of all types of long-term care, including half of nursing homes residents, the report found. By comparison, diabetes was a condition of one third of nursing homes residents.

The national Alzheimer’s Association suggests a series of questions people should ask themselves when deciding whether to place someone in care, including: Are the health and safety of either the patient or caregivers at risk? Is the situation making the caregiver stressed or irritable?

In the Coachella Valley, there are more than 160 licensed elderly care sites, according to Kae Hammond. These range from large facilities, like Caleo Bay, that specialize in Alzheimer's, to the smaller operations in private home care for a few patients.

Bob Machado, a fee-only financial planner with Compass Rose Financial Planning in Palm Springs, advises clients they should prepare to pay $100,000 annually for decent long-term care in the desert.

People typically know it's an expense they should prepare for, Machado said, but when they sit down and actually consider the future cost "it just destroys their plan."

Medicare doesn't pay for long-term care. Long-term care insurance can help cover some of the costs, but plans vary. Veterans benefits can pay for some care. Medi-Cal, the state medical plan for low-income residents, can pay for nursing home care if it's deemed medically necessary, but Anne Gimbel, the Alzheimer's Association's regional director for the Coachella Valley, said those patients are often directed to facilities outside the area in Yucca Valley or Moreno Valley because of the lack of closer options that accept Medi-Cal.

Gimbel said some families will sell a home or pool their money in order to get a member with dementia into care. Latino families will often bring a grandmother or grandfather into their home and care for loved ones on their own. Other times, a person who can no longer care for himself can at least qualify for in-home hospice care where someone comes to the house a few times week to make sure the patient is eating and taking medications.

"That's the sad part, there really isn't anything for the indigent," Gimbel said.

Hammond has spent years studying the Coachella Valley’s adult care market and placing people. Prices are wide-ranging, she says, and vary depending on the type of facility and level of care required. Unless a person needs hospitalization, care sites will generally be able to care for someone through the end of their life. But that's something family members will want to ask about as they look at options.

Assisted-living centers can offer spaces ranging from a studio apartment to a two-bedroom/two-bathroom unit with base rents going from around $2,400 per month, up to $5,600. Beyond the base rent, extra fees can be added depending on additional care needed like help bathing or taking medications.

One benefit of the more specialized memory care centers is that the cost are often all-inclusive, with monthly rates of between $4,200 and $6,500, according to Hammond. But she says people should still be on the look-out for hidden fees.

Private residential care homes, sometimes called “board and cares,” will range from $2,800 a month to $6,000 with homes on the low end offering more limited care, Hammond says. A shared versus private room can cut $500 off that monthly bill.

In general, Hammond says, the small residential homes will be cheaper. Some of what’s paid for in the larger communities are more organized programs and and steady stream of activities. That may be a bonus for high-functioning people. For others, that matters little.

Shirley Hammond, for example, was functioning when she moved into the home eight years ago but now seems content sitting in her chair with other residents in the TV  room. She’ll resist efforts to play along with any activities.

But Gail Lansbury likes the activity options Caleo Bay has available for Bruce. Even if he isn’t involved in everything, he’s getting social interaction.

“What care does is they keep them busy,” she says. “By myself at home, you couldn’t keep him busy … It’s not like being in a facility where they have a lot of people, a lot of  groups, a lot going on.”

MORE: Part 1 of dementia series

When dementia upends a marriage: Inside the emotional journey

Going beyond price, cleanliness is an obvious indicator of the type of care a home provides, Hammond says. She advises people to not be turned off by a sparely decorated space. Bathrooms will be intentionally bare, and even toilet paper will be kept out-of-sight to keep residents from clogging up the plumbing, she says.

“My mother started taking things down off the walls, so we just emptied the room,” Hammond says.

The home should have clean counter tops and all medications, including over-the-counter pills, should be kept out of reach and locked. The residents may seem sedentary, spending much of their time sitting and watching TV. That’s normal, but activities and the opportunity to go outdoors should be available.

Meals don’t have to be gourmet, but Hammond said they shouldn’t be using just pre-packaged foods.

“I want to see more fresh fruit, a lot more fresh vegetables,” she says. “And I would say by and large you’re going to see that.”

One home at a former medical office in central Indio caters to older adults of all health conditions, including people who are otherwise healthy but can no longer live completely on their own. Among its amenities are a small library with Internet access.

The California Department of Social Services issues licenses and otherwise regulates adult care operations, ranging from the large homes specializing in dementia and Alzheimer’s care like Caleo Bay to the small residential care homes like where Hammond’s mother still lives. Information about recent complaints, citations and inspections are available through a state website.

Adult residential care facilities are often cited by government inspectors for failing to meet state standards. The California Department of Social Services reported that more than one in five sites were cited for cleanliness or safety issues in 2014. Of facilities caring for dementia patients, 13 percent were cited for failing to keep potentially dangerous items out of the reach of residents, such as knives, matches and firearms. Ten percent of dementia-care sites were cited for allowing other items such as tools, medications, alcohol or cigarettes accessible to residents. The state listed no violations online for Caleo Bay in La Quinta.

Families should ask about the caregivers experience working with dementia patients, Hammond and Gimbel say. As of this year, caregivers are required to get dementia experience as part of their ongoing training, and Gimbel says family members should ask if the site is compliant with new training rules, even if they themselves aren't up on the requirements.

"Until you have a flood in your house, you don't know what to ask. And it's the same when hiring a caregiver. Until you're in it, you don't know what to ask," Gimbel says.

Gimbel's office offers some resources to help families make a decision, including a list of guides like Hammond to help them through the process. Gimbel said families should not rush their decision about placement, and if they're working with a consultant, fully understand how that person is paid.

"Don't necessarily listen to others; listen to your heart and decide," she says.

Hammond also suggests people visiting a home look to see how clean residents' fingernails are kept and if closets are orderly for an indication of how the home is managed. A facility may raise rates if a person's condition changes and they require more attention, so Hammond recommends that families ask in advance about what would prompt the site to raise its rates.

And homes should be open to having family members drop by for visits and bringing special items like food for the residents. If they don't want families around during meals, for example, that should be a red flag.

After one recent visit, Hammond and her mother go through a common routine. Kae tells her mother she’s going to school but promises to be home for dinner.

“Have fun,” her mother says.

Kae learned years ago that part of her mother’s mind has reverted back to decades earlier when Kae was in high school. Going along with that belief is a great comfort to her mother.

“We have to learn to live in their world."

Alzheimer’s Association, a national organization offering information and support related to Alzheimer’s disease and other forms of dementia. www.alz.org.

The Alzheimer’s Association's Coachella Valley office is at 77564 Country Club Drive, Ste. 128, Palm Desert. The office can provide local information about caregivers, housing, support groups and other resources. (760) 996-0006.

The Riverside County Office on Aging is starting a series of workshops in April for family and friends caring for older adults with Alzheimer’s and other chronic conditions. To register for the series of free workshops, called “Care Pathways,” call (951) 867-3800 or (800) 510-2020.

Health and wellness reporter Barrett Newkirk can be reached at (760)-778-4767, barrett.newkirk@desertsun.com or on Twitter @barrettnewkirk.