Former Good Morning America host Joan Lunden is used to researching facts and digging for answers. But when it came to finding the best living facility for her mother, Gladyce, who had a diagnosis of dementia, the seasoned journalist admits she did not do her homework. As a consequence, her mom ended up moving multiple times.
"We did not have the 'family talk,'" Lunden says, "so when it came time to step in to care for my mom, I learned the hard way that you have to do a lot of investigating and consider professional help to make good, informed decisions."
The Goldilocks Syndrome
More than 44 million Americans care for a loved one over the age of 50; about 4 in 10 family caregivers look after a parent, often while juggling careers and their own parental responsibilities. These demands leave little time to thoroughly research and understand the variety of senior living facility options available today and make the right decision.
But when a choice is made hastily or without a realistic analysis of a parent's needs, families may wind up moving a mother or father through a series of facilities, impacting his or her emotional and physical well-being due to what's known as relocation stress. Such moves can also affect a family's financial health. When adult children try out several living options, forcing multiple moves until they find the "perfect" choice, I call it "the Goldilocks syndrome."
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Once Lunden realized her mother could no longer live in her own home, even with the support of day and evening health aides, she set out to find a "fancy schmancy" new place. Lunden chose a beautiful assisted-living community with garden views, a gorgeous dining room, a full calendar of activities and a friendly staff. However, she did not realize the extent of her mom's dementia, which by then included "sundowning," a symptom experienced by 20 to 40 percent of Alzheimer's patients. It can include paranoia, emotional outbursts, screaming, crying or violent behavior, typically at the end of the day.
When Gladyce came down to dinner at the residence, she was frightened by the unfamiliar faces. Staff members struggled to calm her. Realizing it was not the right place, Lunden eventually moved her mother into a different facility. But after several falls there, resulting in a broken rib and toe as well as stitches in the head, Gladyce's physician recommended what's known as a residential care site.
At this kind of memory-care facility, typically a house in a residential area, six to eight residents get around-the-clock, live-in specialized care. Lunden was skeptical that the staff was equipped to help her mother in an emergency because of the setting's informality. But a senior care adviser from A Place for Mom, a national senior living referral service, advised Lunden that her mother would get more focused, constant care than she could in the larger residences she had already tried. (Lunden is now the lead national spokesperson for A Place for Mom.)
(MORE: Patient Navigators: New Help for Caregivers)
"After just a few weeks, my mom perked up and became the 'Glitzy Gladyce' friends and family remembered," Lunden says. "What I realized is the first assisted living home wasn't suited to her life as a woman who needed dementia care. Her new home reminds my mom of our old family home — and, with fewer residents, she feels more comfortable and safe. I only wish I had known all this before we started this journey."
Keep Your Priorities in Focus
Lunden's experience is not unique, says gerontologist Rosemary Laird, medical director for Health First Aging Institute in Melbourne, Fla. Too many people focus on amenities instead of expertise. "We see a beautiful dining room, a gorgeous view, beautiful architectural appointments and great lifestyle activities, such as free transportation to malls and churches," she notes. "Instead we should be asking more questions about staffing, levels of care, how often the staff checks on residents and whether the facility provides hospice care if needed."
Senior living options range from aging in place, perhaps with services from the Village Movement, to continuing care retirement communities, or CCRCs, that offer various levels of support on the same campus. Most family caregivers, however, are unprepared to make the best choice, especially if they underestimate a parent's true needs, as Lunden did. But since families often don't begin the search for residential care until there's an emergency or hospitalization, they are often pressured into quick, uninformed decisions that can backfire. For all these reasons, it's important to plan ahead.
"The same consideration we put into purchasing a new home or car needs to be applied to helping mom choose an alternative place to live out the rest of her life," says Rick Grimes, president of the Assisted Living Federation of America.
Caregivers should conduct Internet research then embark on in-person site inspections, where they can get fully briefed on services and community resources, including the capabilities of the nearest hospital. The federation's website offers checklists and financial information to help guide the decision-making process.
Here are five more tips to help your family avoid the Goldilocks syndrome:
- Start the search now. Talk to your parent about his or her priorities for long-term care facilities. Even someone with early dementia can still share their fears and concerns about where they might move. "Family caregivers make two mistakes in finding the right facility for a parent," says Anne Cason, geriatric care manager and author of Circles of Care – How to Set Up Quality Home Care for Elders. "They don't advise the staff of important care needs or issues, such as wandering or violent outbursts, because they are fearful the facility won't accept their parent. They also have a hard time letting go of the family home where they grew up, thus keeping mom there longer than they should."
- Research for now and the future. Make sure you completely understand your loved one's needs. If there are progressively degenerative conditions, like Alzheimer's disease or multiple sclerosis, consider the realities of escalating care needs over time and look for a facility that will be able to manage those changes. Tour sites at different times of the day, Laird advises, and engage staff members in the halls instead of relying on formal tours, when everyone puts on their best face.
- Don't choose a home you like. Pick one that meets your requirements. When you evaluate a facility, take in the lovely grounds, note the activity calendar and smile at the friendly staff. But don't forget to ask the important questions about staff-to-patient ratio, nurse turnover rate and resident, family and inspection evaluations. When a facility is unwilling to share its ratings, Grimes says, that's a major red flag. "Assisted living is a competitive area right now," he says. "Any facility not marketing their great rating is to be avoided." The federal Centers for Medicare and Medicaid Services annually rates long-term care facilities through its 5-Star Quality Rating program. In addition, Caring.com's senior care directory provides consumers with ratings for more than 100,000 facilities, based on 51 criteria.
- Get professional advice. Many free senior-living advisers, Grimes points out, will recommend only the facilities that pay the locator a fee, limiting your options. One alternative is to engage a geriatric care manager who can assess your loved one's needs and provide objective recommendations. "Often professionals will save families the heartache and headache of making multiple moves," Cason says. "They can wind up saving families a lot of money."
- Consider a "test drive." Many assisted-living communities now help you ease a loved one into a facility through respite care programs that allow a potential resident to stay for a weekend or even a few days. Such an arrangement lets the person become accustomed to surroundings and daily activities without feeling forced into an immediate decision. It also makes the entire family feel more comfortable if and when a permanent move is required.
Lunden says her experience taught her there are two crucial questions when considering an alternative home: "Is my parent safe and well cared for and is she happy?"
If you can answer yes to both, she says, you may get it right on the first try.
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