The rampant and dangerous use of antipsychotic drugs to treat dementia symptoms in elderly patients has been in the spotlight recently due to Johnson & Johnson being hit with a $2 billion fine for the false marketing of Risperdal. Could the answer to this disturbing trend be yet another medication?
A drug called Pimavaserin is undergoing a trial right now to examine its safety in treating Alzheimer’s disease psychosis. Currently there is no medication on the market that specifically treats this condition, and we’ve seen the consequences of the off-label use of other antipsychotic drugs. I saw what Risperdal did to my father and readers of this blog were vocal about their concerns in properly medicating those with dementia.
One would hope that a medication can be created to ease the mental and emotional suffering of dementia patients without turning them into walking zombies.
Good news for my mom and other seniors who have their fair share of “it’s on the tip of my tongue” moments. Apparently, the frustrating condition does not appear to be a symptom of dementia, according to the results of a recent study. The study involved over 700 subjects and while older people struggled more with these “tip of tongue” moments, the study concluded that there was no link between these temporary memory glitches and dementia.
We all have those moments where we try our darndest to think of something but it remains just out our reach of memory. It’s frustrating, but as we get older, those moments sometimes are more frequent. My mom is an interesting case because she has always had this way of going off on several different tangents and forgetting what the original point was. It’s frustrating for her, and for me. :)
But Mom worries every time she struggles to remember something that she is exhibiting the early signs of dementia. After losing Dad and a sister to Alzheimer’s, it’s an understandable fear. As I march towards 40, early-onset Alzheimer’s is on my mind.
It’s a relief to know that these slips of memory are not something that we should worry about too much. We have enough to worry about as it is!
The Intensive Care Unit offers the best of care for critically ill patients. It is necessary in certain cases and the quality of care and technology available in the ICU has saved countless numbers of lives. But a recent study discovered that extended stays in the ICU can trigger dementia symptoms.
Shorter ICU stays may help reduce the risk of dementia symptoms.
The Vanderbilt University study followed 800 patients after their ICU stay for a year. A whopping 75 percent exhibited signs of dementia during the study period. 1 in 3 exhibited symptoms of Alzheimer’s disease. The age of patients did not impact the display of symptoms. One example given in the article was a 46-year-old woman who spent three weeks in the ICU was still dealing with cognitive impairment issues 18 months later.
The study concluded that both serious illness and anesthesia drugs used during surgery could be dementia triggers.
My mother, who does not have dementia, had two surgeries last year that landed her in ICU. Her first surgery was of emergency nature and landed her for several days in the ICU. The second surgery was scheduled and Mom spent only the minimum amount of time in the ICU that is required post-surgery. Mom also had multiple complications (blood clots) with the first surgery. Her mental state was impaired for months after the first surgery but she was alert and talking just about an hour after the second surgery was completed. Her mental recovery from the second surgery was very quick.
When my dad had to have surgery to remove a kidney stone, he was in the middle stages of Alzheimer’s. His recovery was very slow and I do believe his cognitive functioning declined more rapidly than it had been before the surgery.
We can’t always avoid stays in the ICU, but advocates suggest asking for lighter sedation options when possible and trying to get patients engaged in mentally stimulating activities while they are recovering.
What has been you or your family member’s experience been like in the ICU?
There is much talk here in the U.S. as the new health care exchanges that the Obama administration has developed to lower health insurance costs open on October 1st. But I found an article this week that has some surprising results in another part of the health insurance world that impacts dementia patients.
Presbyterian Hospital, the last place I saw Dad alive.
A study conducted by NYU researchers found that dementia patients with managed care insurance were sent to the hospital less often to treat end-of-life health issues that would not improve their quality of life. Managed care organizations receive a lump sum payment for each patient, so they have an incentive to keep costs low by not encouraging unnecessary medical care. However, those with traditional Medicare which pays a fee for each service rendered were sent to the hospital more often. The difference in hospitalizations by insurance type was significant: only 4 percent for those with managed care vs. 16 percent for those with Medicare.
Managed care incentives to keep costs low can backfire on patients, sometimes limiting coverage of services that are not medically necessary but would improve quality of life. But in this instance, the focus on the financial aspect of healthcare actually benefits advanced stage dementia patients. My father was in and out of hospitals the last year of his life because his inpatient stays were completely covered by Medicare. But they did not improve his quality of life; in fact the sudden change of environment may have left him more mentally confused. The elderly are also at high risk for serious, even deadly hospital-acquired infections every time they spend time in an inpatient facility.
It’s one of those rare examples where shrewd and calculating financial decisions actually translates to compassionate action.
Data released by the Centers for Medicare & Medicaid Services found that antipsychotic drug use in nursing homes has declined 9.1 percent for the first quarter of 2013. In 2010, over 17 percent of nursing home patients had daily doses exceeding recommended levels. The CMS launched the National Partnership to Improve Dementia Care last year and hopes to reduce antipsychotic drug usage by 15 percent by the end of 2013.
The overuse of antipsychotic drugs in nursing homes, especially to sedate dementia patients is an issue that strikes home for me. I watched my father suffer the consequences of being kept in a zombie state on these drugs. While I can’t know if my dad suffered while on these medications, my mother certainly did as she visited my father in this drugged state on a regular basis. My father only showed minimal aggression which probably could have been treated with behavorial therapy or milder drugs with less side effects. The main reason he was so heavily drugged was because like many dementia patients, he wandered.
I do feel for the understaffed, overworked and underpaid nursing home staff, who have no doubt found it easier to give patients a pill to keep them from becoming another problem to deal with. There is no easy solution, but filling helpless people full of drugs is not the answer.
Let’s hope the CMS initiative continues to be successful.
I haven’t had a chance to watch the PBS Frontline special called, “Life and Death in Assisted Living” yet, but I did read the online report. My interest was certainly piqued when I discovered that Emeritus was the assisted living company being investigated. My father spent the last year of his life in an Emeritus facility. I’ve written many posts about the good and bad experiences there. The PBS report takes a long and hard look about how Emeritus seems to be more interested in raking in cash that taking good care of patients. The accusations made range from hard-selling (fill those beds!) to employing woefully unqualified people to take care of dementia patients and not filing incident reports as required by law. To be fair, I would think that most of the corporations running senior residential facilities have aggressive financial goals, so Emeritus is probably not any better or worse than most of the other companies.
Are assisted living companies putting greed over good care?
I know that if my mom had understood Dad was going to be an hour-and-a-half away from her, she would not have agreed to move him to the Emeritus property but somehow, that seemed to happen overnight. Mom said it was without her permission, but having asked around and now seeing how profit-focused Emeritus seems to be, I think it was just a hard sell tactic and Mom ended up signing a paper that allowed Dad to be moved. The rate increased multiple times in the 10 months he was there. I remember talking to the admissions coordinator when we were just checking out facilities and she told me that Dad’s monthly checks should cover “most” of the costs. Not even close. By the end, we were paying over $4000 a month and Mom had just received a notice that another big rate hike was coming right before she transferred him closer to home.
That rate didn’t include any medications, which racked up a bill totaling several thousands of dollars that we just finished paying off earlier this year. I did report the facility to a state board because I felt they overmedicated my father and gave him medications that were under scrutiny for being dangerous to give to elderly patients. I never heard any followup from my complaint.
The PBS report also talks about the numerous patient falls due to staff not adequately supervising patients. My father fell several times while at the Emeritus facility. The staff called us each time there was an incident (that we know of) and took him to the hospital when necessary. Even with adequate staff, preventing a fall can be difficult with dementia patients. I feel that the Emeritus facility that my dad was at followed the rules in this area, though I did wonder if there was a better solution than placing my dad’s mattress on the floor after he fell out of bed multiple times.
I’ve read both good experiences and horror stories when it comes to senior residential facilities from the amazing bloggers I follow. If you have the chance to catch the PBS special, let me know what you think. Can corporate entities balance making a decent profit with providing excellent care for our most vulnerable citizens?
On Monday, I was lucky enough to get a chance to attend a free reading of the play, “Absence” by Peter M. Floyd. It was presented at the Alliance Theatre, one of Atlanta’s most respected theatre companies. Before the reading, there was a senior care resource center where local companies were on hand to talk about their products.
The play itself is quite simple, yet powerful. A strong, vibrant woman develops dementia and the play illustrates the impact her diagnosis has on her and her family. Anyone who knows someone with dementia will be able to relate to the themes of the play: denial, anger, frustration, sadness, desperation.
There are a some moments of humor sprinkled throughout but overall the play is a sobering reminder of the impact dementia has on family relationships. I was intrigued by the personification of the disease in the form of a wise-cracking doctor with a northern accent. Throughout the play, he acts like a drug pusher trying to peddle heroin on an unsuspecting youngster, telling the lead character that Alzheimer’s wipes the slate clean, along with all of your regrets and mistakes, making you feel free. It’s an interesting perspective.
The lead character and her daughter reminded me of my own relationship with my mom. I would love to see the play fully produced, as I was really blown away by the reading alone.
If you get the chance to see this play, don’t hesitate but be prepared for it to hit close to home.
For those of us who have lost a father due to Alzheimer’s complications or who are watching their dad battle the disease right now, Father’s Day is a holiday with mixed emotions. But while the damage Alzheimer’s inflicts on families should never be forgotten, this is also a good day to reflect on the positives of your relationship with your dad. After all, you might not be feeling such pain or loss if you did not value him and love him deeply as a father to begin with. For some people being estranged from their father makes this holiday a very painful experience as well.
For me, the realization that I did deeply love my dad and didn’t have this distant, indifferent relationship I always imagined came after Dad began losing his mind. That is unfortunate, but I know right before he started to change, I was able to tell him how I know it was difficult dealing with Mom sometimes and to just try to hang in there. In fact, one of the last things I remember him saying to me on my last visit before he became ill was, “Your mother is driving me crazy!”
I can still hear his hoarse, smoker’s voice making that half-joking, half-serious accusation. (My parents drove each other a little crazy, but they were devoted to one another.)
I could beat myself up today for not being there more often for my dad when he began the sad, slow slide into dementia. But at least I did get to hold his hand and tell him how much I loved him in the last couple of months of his life. And he was even aware and able to respond at one point: “I know you do.”
Actions of the past can’t be changed so as caregivers and family members we should stop being so hard on ourselves. Take today to remind yourself of the more pleasant times and let them bring joy to you even now as you mourn or suffer.
I read about an interesting study today that found those in the early stages of Alzheimer’s may try to mimic the emotions of those around them. The results suggest that it is in the best interest of caregivers and family members to try to maintain a calm and positive demeanor in the presence of those with dementia. I know, easier said than done, right! Still, it is interesting to wonder if the emotional disturbances and changes are a result of Alzheimer’s patients becoming more sensitive to the emotions of those around them. And anyone who has dealt with someone with Alzheimer’s knows that there is a great deal of anxiety, frustration and sadness, especially early on before proper coping mechanisms are developed. The condition has a name: emotional contagion.
A new study finds that dementia patients may mirror the emotions of those around them.
I’m not sure I witnessed my dad mimic other’s behavior but I did notice his excessive attempts at “fitting in” or being part of a conversation or situation. He would try to make a relevant comment but I could tell by his eyes that he had no clue what Mom and I were discussing. As I’ve mentioned in previous posts, this stage of the disease is actually more heartbreaking to me than later on, when many patients “disappear” emotionally. Once Dad entered the nursing home, he was heavily medicated as most dementia patients are, which tends to turn one into a zombie. I struggled more with Dad trying to be upbeat and tell jokes even while he was clearly losing his mind than the sullen, withdrawn shell of a person he became in the nursing home.
Whether the person with dementia mirrors the emotions of others are not, it of course is best for everyone if a calm and stable atmosphere is maintained. That’s not to say you should beat yourself up if you show exasperation in front of your loved one with dementia. It happens, we’re human. But even while dementia strips away abilities and memories, it may magnify sensitivity in other areas that before we have ignored.
I’ve been contemplating grief, both mine and others lately. This was even before the tragic events at the Boston Marathon. I’ve watched documentaries covering the topics of the dying and the grieving process for those left behind. I watched “Griefwalker” featuring Stephen Jenkinson, a fascinating man who has dedicated part of his life to helping spiritually care for the dying. He makes some interesting points about how much humans fear death, even now with technological advances that removes much of the pain and suffering. We have convinced ourselves we fear the suffering, but it is really the unknown that death offers that strikes fear in our heart.
Image credit: OrphanWisdom.com
With Alzheimer’s and dementia patients, it’s so hard to know how much they still understand as they move towards their own dying process. I know my father was very afraid of dying, and especially of the thought of being placed in a coffin and buried. At least we were able to take that worry from him by having him cremated. But there is no way of knowing if those who are mentally compromised grasp the notion of death even in the moment it occurs. Perhaps it doesn’t matter at all to the dying, perhaps they are already on a different plane. Perhaps it is only those that are left behind who must grapple with the dying process.
I often think back to the morning my father died in the shower of the skilled nursing facility. Was there any recognition on his part that he was departing this life? Or was he trapped within the murky world of dementia until his last breath?
In ways I think we try too hard to make sense of the very natural processes of living and dying. We complicate matters by trying to rationalize every aspect of our world instead of allowing ourselves to feel both the pain and joy of living.
This quote from Stephen Jenksion is very simple yet profound: “Grief: It’s how you love all of those things in life that end.”