Notes on Health and Aging
By Joan Aragone
MOVING DOCUMENTARY ON ALZHEIMER’S TO AIR SEPT. 8
A year after New England wife and mother Pam White began a memoir of her late mother’s diagnosis of early-onset Alzheimer’s Disease, White herself, then 61, was diagnosed with the disease.
Her mother Marian Williams Steele (1915-2001) had been a well-known artist, and White’s son, San Francisco-based filmmaker Banker White, had been assisting his mother with research, recording with his camera Pam’s lively stories and memories of her happy New England childhood.
But as Pam’s disease progressed, her son focused not only on his mother’s memories and stories but on her own condition and its impact on her family. The result is “The Genius of Marian,” a sensitive, tender and moving, 90-minute documentary about a bright and talented woman diagnosed with early on-set Alzheimer’s Disease and her family’s response. See it Monday, Sept. 8, at 10 p.m., on Point of View (POV), KQED-TV, San Francisco Bay Area, or check local listings.
The film follows Pam’s struggles, from early stages of “memory issues” to later states of confusion, distress and angry resistance to care, revealing challenges to and depths of love from family members.
“On the surface, the film is about my family’s effort to come to terms with the changes Alzheimer’s disease brings,” White said in a statement. “But it is also a meditation on the meaning of family….The last few years have been a roller coaster of emotions, filled with frustration, sadness, joy and celebration.”
According to the Alzheimer’s Association, approximately 5.4 million people in the United States are diagnosed with Alzheimer’s disease; up to 5 percent have early-onset, which affects people younger than 65. And for the 15 million caregivers, the stress can be debilitating.
“The Genius of Marian” is an Official Selection of the 2013 Tribeca Film Festival, and will stream on POV’s website, www.pbs.org/pov/geniusofmarian/, from Sept. 9 – Oct. 8. It’s a beautiful film.
FREE CAREGIVER CLASS ON TALKING WITH MEDICAL STAFF
Family Caregiver Alliance consultant Christina Irving will present a free class on “Communicating and Advocating with Medical Professionals” intended for family, not professional, caregivers, Wednesday, Sept. 10 from 3-5 p.m., Catholic Charities Adult Day Services, 787 Walnut St., San Carlos, CA. To register contact AJ Dugay, 415-434-3388, or email firstname.lastname@example.org
REPORTS SHOW FLAWS IN NURSING HOME EVALUATIONS
Finding a suitable nursing home for a friend or relative can be a daunting task. But two recent news articles—one from the New York Times examining the “gaming” of the Medicare nursing home rating system by many such facilities, the other by Kaiser News Service on a pattern of faulty nursing home inspections in Los Angeles County—provide perspective on how to interpret ratings and how to investigate nursing homes yourself. They are required reading for families searching for a suitable site.
“Medicare Ratings Allow Nursing Homes to Game the System,” by Katie Thomas, appeared in the New York Times Aug. 24, with a focus on a facility in Carmichael, CA. The following day the Times published an editorial on the subject. To find the story online, google: “New York Times, Gaming Medicare Rating System.”
On Aug. 29, Kaiser Health News published a story on incomplete nursing home inspection reports in Los Angeles County. The story is reproduced below with permission:
“Nursing Home Inspections, LA County”
By Anna Gorman, Aug. 29, 2014
“Provided by Kaiser Health News.” www.kaiserhealthnews.org
Los Angeles County public health officials inappropriately closed nursing home investigations and failed to follow state guidelines on prioritizing complaints, according to an audit released this week.
The Los Angeles County auditor-controller also found that even after nursing home inspectors found serious problems, their supervisors downgraded the severity of findings without any explanation or without discussing the changes with the inspectors as required.
“The quality and integrity of investigations is impaired when surveyors’ conclusions are changed without their knowledge,” according to the audit.
The audit was the latest of several reviews showing problems with how the county Department of Public Health oversees residents’ health and safety at about 385 nursing homes. The county, the most populous in the state, contracts with the state and the federal government to inspect the facilities and to investigate complaints from residents, family members and staff.
Earlier this summer, the California Department of Public Health determined that the county wasn’t following state policies on inspections, leading to incomplete and delayed investigations. The county issued an audit in April that documented a lengthy backlog of investigations and concluded that a lack of central oversight contributed to the delay. At the time, about 945 cases, had been open for more than two years.
The scrutiny of the department came after a Kaiser Health News investigation found the county was instructing inspectors to close cases without fully investigating them.
The most recent audit was based on a review of a small sample of cases — about 20 of the more than 3,044 that were open in March 2014 and 30 of the 1,124 cases that had been closed between July 2012 and April 2014. The audit found that five of the 30 cases were closed inappropriately without “conducting or completing the investigations.”
In addition, supervisors downgraded inspectors’ findings in 12 of the 30 closed cases, meaning that the nursing home got a less serious citation or a smaller fine. In most of those cases, there was no documentation for the reason.
The audit didn’t give many specifics on the problems found at the nursing homes but noted that five cases involved deaths. In one, an inspector found the death could have been prevented. Others involved nursing homes not complying with doctors’ orders or checking whether a patient had negative reaction to medications.
The auditor-controller recommended that the department’s inspectors, managers and doctors improve documentation and communication to “ensure the quality and integrity of their investigations.”
“Without adequate documentation, it is very difficult to ensure that deficiencies and citations are handled in a consistent, thorough and equitable manner,” the audit read.
The audit also found that the public health department failed to reassign a case when an inspector retired.
The county Department of Public Health responded to the audit with a letter saying that it agreed that the documentation was “sometimes lacking” and that improvements were necessary. Officials also said that they had already made several changes, including putting new people in charge of the division responsible for inspections and improving the tracking and prioritization of complaints.
But, as in the past, county public health officials also wrote that the department is underfunded and “severely understaffed.”
The county public health department is responsible for reviewing one-third of the state’s facilities but only receives 15 percent of the funding, according to the response. If the state doesn’t provide “sufficient resources” for the program, county public health officials wrote, the department may not be able to continue its contract to oversee the nursing homes.
The April audit found, however, that the county did not spend all the money at its disposal — more than $2 million of the roughly $27 million in state funds in each of the last two fiscal years. This article was produced by Kaiser Health News with support from The SCAN Foundation.
Kaiser Health News is an editorially independent program of the Henry J. Kaiser Family Foundation, a nonprofit, nonpartisan health policy research and communication organization not affiliated with Kaiser Permanente.
Watch for the October edition of Notes on Health and Aging from Joan Aragone.