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When their mother became a nursing home escapee, her helicopter daughters wondered what the sweet 93-year-old widow was thinking. She was quick to answer. “I wanted to pick up a few things to cook for your father tonight.” The woman’s daughters gave a collective deep sigh and went back to the drawing board.
Despite their hovering and search for the perfect nursing home, their mother’s worsening dementia limited their choices. Questions to ask about ratings, activities and atmosphere as well as cultural sensitivity, patient rights, and physician availability may seem obvious. However, even with all the guides designed to help families, getting answers is a challenge.
The memory thief and behavioral problems of urinary tract infections
The 93 year-old, technically called an eloper, was humorously labeled a “juvenile delinquent.” She was young at heart, but the memory thief turned her mind into an intermingling of long term remembrances, short term forgetfulness, and the confusion of delusional thinking. She was stuck in her married past unable to comprehend why she had to live in a room with no kitchen to cook pasta for her husband.
While she had previously spent one year in a nursing home -- when she had UTIs, she became a different person. This time an undiagnosed urinary tract infection (UTI) turned the dignified women into an angry and agitated person who suddenly reverted back to married life. This is just one illustration of how important it is to look for hidden questions and answers, in this case, the number of UTIs reported in a particular nursing home and how these are handled.
Curtains over care
As is often the case, in choosing a nursing home one may look at curtains over care because people want a home that is decorated tastefully. Sometimes one assumes that if it looks good the care will be good – which is not always true. Frequently the nursing home choice is made too quickly as the result of a hospitalization. A hospital discharge planner will announce to the family one day that “Time’s up” and two choices are offered.
Sometimes people are fortunate and the nursing home with new curtains and well appointed furniture turns out to be a good one. But it is not unusual to hear of a patient being moved to two, three, even four nursing care facilities in a matter of months. For those making the nursing home search, questions to ask are important. Finding the answers takes time and diligence.
Ratings vs. reality
When searching for a nursing home, here are some of the key resources.
1) Medicare.gov - Nursing Home Overview provides “information relating to Medicaid and Medicare certified nursing homes throughout the United States. It includes information on payment and patient rights, and a nursing home checklist which will help you evaluate the nursing homes that you visit.”
2) Nursing Home Compare - Medicare.gov directs one to state sites and phone numbers,
3) America's Best Nursing Homes - News - US News and World Report, is a star-rated overview, and
4) Nursing Home Inspect, makes nursing home inspection reports available. ProPublica, a nonprofit investigative journalism organization in New York is the group that devised Nursing Home Inspect a tool that allows users easily to examine trends at the facilities, according to reporter Charles Ornstein, one of those who spearheaded the project.
For example, this tool will help one determine the number of UTIs or bed sores at a particular institution.
Ornstein said: “U.S. Centers for Medicare and Medicaid Services (CMS) made the decision to put inspection reports online, but there was no means to quickly compare homes. With our tool people can search through and obtain information that they need. This tool makes available more than 58,000 nursing home inspection reports from the past three years encompassing over 262,500 deficiencies.”
Question to ask yourself from observation:
The elderly sometimes feel most comfortable in a nursing home in a district where they were raised, one that reflects an ethnic flavor. But others like diversity.
- Is the population one in which your family member might be comfortable? Nursing homes are often the microcosm of the community from school teachers to truck drivers from professors to grocery clerks.
- Is it culturally diverse enough for a family member? Or is it too diverse?
It is important to watch for clues as to how minority populations are integrated or segregated – sometimes by choice -- because of their age and/or cultural backgrounds. I have an aunt who often seeks out women who speak Italian, even though she remembers very little of the family dialect.
Nursing home population shift
A team of researchers at Brown University, lead by Dr. Zhanlian Feng of the Center for Gerontology and Health Care Research called upon policy makers to reduce racial and ethnic disparities in nursing homes given that there is “a rising proportion of racial and ethnic minorities in the US nursing home population” in which Hispanics and Asians, followed by African-Americans are “the fastest-growing minority groups among nursing home residents. Growth Of Racial And Ethnic Minorities In US Nursing Homes Driven. This, too, is discussed further in “Nursing Home Parenting, Part 2: Physicians, Patient Rights, and Change.”
Atmosphere, dining room look and feel
Visit during times when you can look at the dining room, the activity room, the family or social room. Lunch times are important because that is the big meal of the day and socialization is an important factor. Dinners usually consist of soups and sandwiches. Residents often opt to eat in their rooms for this meal, especially in a nursing home that bustles with activity during the day.
Questions to ask:
- How many people eat in the dining room vs those who eat in their bedrooms at lunch? At dinner?
- Is seating by preference or by assignment?
- If a resident is uncomfortable with a seating arrangement, what is the process for change?
- Are people talking to one another?
- Is staff helping at those tables where food needs to be cut?
- Are more frail residents welcome to dine with others if the are using a wheelchair, walker or cane?
Answers to expect:
There should be a full dining room at lunch time. Table seating is often by assignment, but one of the activity directors should point out that they try to match up people according to compatibility.
As for the process of changing the seating – if someone begins seating themselves at a table in which other residents object, a sensitive facility will tactfully redirect. Some organizations might have social workers who say “patient rights" despite a seating chart on the wall or objections for the others at the table rather than try to find a solution that is beneficial to all parties.
Activities and cultural sensitivity
Activities are vital to socialization. Are people lined up in the halls or are they participating in events? Are the CNAs involved with helping residents participate or are they sitting in the halls?
If activities are in the dining rooms -- look to see what puzzles, checkerboards, or word games are available for residents to enjoy after table clothes are removed. Look at the activity charts to determine interaction, for example, BINGO, Trivia, Sing-alongs.
Attend activities to see how well people participate and determine cultural sensitivity. I was at an activity one day and the group leader said, “Let’s talk about Christmas.”
There were two women wearing traditional Hijabs, head-scarves. When I later pointed this out to the leader and suggested, “Why not talk about the way we celebrate holidays?” Her answer, “Because everyone knows about Christmas.”
This is the mark of an untrained group leader. In many nursing homes, those who lead activities are not necessarily trained in recreation therapy. As such a level of cultural sensitivity is lost and even general sensitivity. For example during a food demonstration one patient kept getting up to move closer to the chef. The leader kept telling her to sit down because she didn't take the time to realize that no one could see what the chef was doing because his large bowls obstructed their view.
Answers to the following questions should be "Yes"
- Are there activities for men such as checkers or chess rather than just offering beading or crafts?
- Are available books appropriate to the audience? (.A prominent senior living campus near DC holds authors’ party showing off a glass case full of books – newly published titles – by residents.)
- Are the books large type and/or do they have colorful photographs? See what author Eliezer Sobel, who created a book for his mother, writes in For Our Loved Ones With Alzheimer's.
- Are leaders following recommended guidelines for Reminiscence Therapy (Reminiscence therapy for dementia from NIH?
- What games, creative painting exercises, and jigsaw puzzles are provided?
- Are residents encouraged to participate in activities such as planting flowers or herbs in individual pots rather than watching another person dig up a garden?
- Are gratitude sessions help to alleviate negativity and encourage positive thinking?
The healing power of music
While most nursing facilities have sing-alongs music should be more than just recreational. Dr. Alison Balbag, at the Andrus Gerontology Center at the University of Southern California, explained:
“Caregivers and families find that when dementia patients hear music from their earlier years or hear their favorite songs that other types of memory are facilitated, such as autobiographical memory.
“In this sense, music serves as an effective ‘trigger’ to spark one's memory. After hearing relevant music, dementia patients may also experience reduced anxiety, decreased depression, and increased communication with caregivers and family members. In this light, music is not only entertainment or leisure, but a rather effective therapeutic tool for dementia patients."
Here is a link to Alive Inside which depicts the power of music in nursing homes.
Songwriting Works™
In Washington, there is a nonprofit organization dedicated to restoring health through music. It was founded by Judith-Kate Friedman, nationally respected for stimulating communication and writing songs even with Alzheimer’s patients. Here is a YouTube video Songwriting Works™ Process. The group received the 2012 Creativity and Aging in America Leadership Award from MetLife Foundation andNationalCenter for Creative Aging.
Questions to ask:
- Is the nursing home providing culturally appropriate songs whether at a sing-along or from invited musicians?
- Do residents have words to songs, preferably large type lyrics projected on a screen or even song sheets?
- Are musical presentations planned on a regular basis during sundowning? A psychological phenomenon, sundowning is experienced with dementia and Alzheimer patients who become confused in the later part of the day.
Answers one might anticipate:
- Most of our residents know the words, they don’t need song sheets. That is not an acceptable answer any more than it would be in a karaoke club.
- Musical presentations during sundowning? This is rare, though some facilities in close proximity to music schools do have performers specifically tuned to dementia patients who need redirection during this difficult time. In other facilities there are sometimes short musical features presented in recreation or dining rooms.
Baby boomers, sex and socialization
The US Census Bureau says there were 76 million boomer births in the United States plus about 2 million recorded immigrant babies who arrived then. As such, there are about 78 million baby boomers born from 1946 through 1964. The oldest of them have already turned 65. Based on many reports, those from the 60s are still interested in making love, not war. Frisky 60s Flower Children Are Still Making Love Not War
Gayle Appel Doll, director of Kansas State University’s Center for Aging, has written Sexuality & Long-Term Care: Understanding and Supporting the Needs of Older Adults. It is a sensitive look at sexuality issues, staff attitudes and family influences. Her book includes questionnaires that might help this population and the baby boomers.
In the nursing home search, what is most important?
Each time one visits a nursing home, new thoughts occur. Visit places that you might not necessarily consider for ideas. For patients in memory care units, watch how staff redirects with dignity. At one facility a particular resident goes into other patient's rooms and "borrows" clothes. Seeing this a nurse came by and said, “Emily, I haven’t seen you all day. Come with me and tell me about your new sweater.”
The new sweater belonged to another patient, and the nurse gently made the switch and soothed her into an activity.
James M. Ellison, M.D., M.P.H., is associate professor of psychiatry at Harvard Medical School and Clinical Director or the Geriatric Psychiatry Program at McLean Hospital in Belmont, Mass.
Dr. Ellison said, "Families need to know that their loved ones are being cared for by a kind staff in an atmosphere that stimulates them emotionally, socially, and cognitively. It's important to remember that even with a diagnosis of dementia people can find joy in the appropriate surroundings.”
Rita Watson, MPH, is a member of the 2013 MetLife Foundation Journalist in the Aging Fellows Program of the Gerontological Society of American and New American Media.
- Is It All In Our Minds? Memory and Aging
- Baby Boomers: Start Turning Nursing Homes Upside Down
- The "Hire a Doc" Nursing Home Shame
- Pumpkin Flowers: The Nursing Home Arrangement
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