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Alzheimersresearchclasshandout.docxAlzheimer’s vs. Early Onset Alzheimer’s
-Early onset is when symptoms come on before age 65
- symptoms of the disease appear in their 40s and 50s
- caused by a buildup of protein called amyloid
-Early onset linked to three genes: the APP, PSEN 1 and PSEN 2
· Together, these three genes account for less than 1 percent of all Alzheimer's disease cases but about 60 to 70 percent of early-onset Alzheimer's cases.
-the APOE gene increases your risk of Alzheimer’s in general
Signs of early onset:
-memory loss
-difficulty planning & solving problems (working w numbers e.g. bills)
-difficulty completing familiar tasks (e.g. getting lost while driving to a familiar place)
-difficulty determining time or place (e.g. planning future events, being forgetful of where they are and how they
got there)
-vision loss
-difficulty finding the right words
-misplacing items often
-difficulty making decisions
-withdrawing from work and social events
-mood and personality changes (extreme mood swings)
Diagnosis
-medical history, cognitive tests of memory, problem solving etc.
-test blood, urine, spinal fluid
-CT and MRI scans
Normal brain vs. AD brain
Changes in the Brain
-the cortex shrivels up, damaging areas involved in thinking, planning and remembering
-shrinkage is especially severe in the hippocampus
-ventricles grow larger
-Alzheimer's tissue has many fewer nerve cells and synapses than a healthy brain
-Plaques, abnormal clusters of protein fragments, build up between nerve cells
- Dead and dying nerve cells contain tangles.
Tangles destroy a vital cell transport system made of proteins
-Before symptoms can be detected with current tests, plaques and tangles begin to form in brain areas involved in learning and memory, and thinking and planning
-In mild to moderate stages, brain regions important in memory and thinking and planning develop more plaques and tangles than were present in early stages. As a result, individuals develop problems with memory or thinking serious enough to interfere with work or social life. They may also get confused and have trouble handling money, expressing themselves and organizing their thoughts. Many people with Alzheimer's are first diagnosed in these stages
-In advanced Alzheimer's disease, most of the cortex is seriously damaged. The brain shrinks dramatically due to widespread cell death. Individuals lose their ability to communicate, to recognize family and loved ones and to care for themselves.
Seven stages of Alzheimer's
· No impairment - no symptoms or evidence of the disease
· Very Mild Decline - Signs of memory loss, in this stage memory loss can not be distinguished from aging memory loss or memory loss correlated to the disease.
· Mild Decline - Surrounding individuals may notice memory loss and cognitive issues. Physicians can test for can the disease through memory and cognitive test. (In this stage personal and valuable items start to be lost)
· Moderate Decline - symptoms of the disease become clearly present. Patients start having difficulty with simple arithmetic , may forget details about their life stories, have poor short term memory and inability to manage finance and pay bills. People are still able to bathe and use the restroom independently in this stage.
· Moderately Severe Decline - patients need help with day to day activities. People in this stage may start to experience significant confusion, inability to recall details about themselves such as their own phone number and difficulty dressing. In this stage people still know their family members and details about their own personal history.
· Severe Decline - In this stage patients need constant supervision and frequently require professional care. Symptoms include confusion or unawareness of environment and surroundings, major personality changes and potential behavior problems, the need for assistance with activities of daily living such as toileting and bathing, inability to recognize faces except closest friends and relatives, inability to remember most details of personal history, loss of bowel and bladder control and wandering.
· Very Severe Decline - This is the final stage of Alzheimer’s disease. Because it is a terminal illness, patients in this stage are nearing death. Patients lose ability to respond to their environment and communicate. Patients may still be able to utter words however they have no insight into their condition and assistance with their daily lives. Patients may lose their ability to swallow in this stage.
Timeline of Symptom Progression
(On average, a person with Alzheimer's lives four to eight years after diagnosis, but can live as long as 20 years, depending on other factors.)
· Earliest Alzheimer's - changes may begin 20 years or more before diagnosis.
· slight functional difficulties like forgetfulness
· Mild to moderate Alzheimer's stages - generally last from 2 - 10 years.
· they may forget familiar words, a family member’s name, or where they placed something.
· getting lost even when traveling a familiar route
· finding it hard to remember the right words or names
· being unable to remember what you just read
· not remembering new names or people
· misplacing or losing a valuable object
· decreasing concentration during testing
· Severe Alzheimer's - may last from 1 - 5 years.
· a fear of being alone
· fidgeting
· frustration
· shame
· suspicions
· paranoia
· Speech is limited to six words or fewer. Your doctor will need to repeat questions during the interview.
· 7b: Speech declines to only one recognizable word.
· 7c: Speed is lost.
· 7d: They’ll be unable to sit up independently.
· 7e: Grim facial movements replace smiles.
· 7f: They’ll no longer be able to hold their head up.
Differences between men and women with AD
-A possible explanation for the increased incidence of dementia in women is that they suffer higher rates of obesity, diabetes, and other conditions which increase the likelihood of developing AD.
· Aβ blocks respiration; mitochondria from females produce fewer reactive oxygen species than those from males
-women diagnosed with AD experience a faster progression of hippocampal atrophy than do men, whereas men might be more likely to progress to AD in the presence of severe periventricular white matter hyperintensities and reduced global cognitive performance.
Caregivers: Final Patient Simulation Research on Alzheimer's 11/29/17
· As a “caregiver”, you may find yourself in a new and unfamiliar role. You may be unsure of where to go for information, anxious about what to expect as the disease progresses and concerned about your ability to support the person living with dementia.
· “A diagnosis of Alzheimer’s disease or other dementia impacts the entire family,” Moreno said. “At its core, families experience the gradual decline of someone they love. This leads to feelings of loss, grief, and sadness. The experience can be overwhelming and place an incredible strain on families.”
In the early stage of Alzheimer's , most people function independently (early stage of dementia may not need much assistance). He or she may still drive, take part in social activities, volunteer and even work. Your role as care partner is an important one: to provide support and companionship, and help plan for the future.
- Maximizing independence : While every person experiences the early stage of dementia differently, it is common that a person in the early-stage may need cues and reminders to help with memory. As a care partner, it may be necessary for you to take the initiative to determine how you may be able to help.
- Understanding emotions : Providing support to a person living with Alzheimer’s disease or a related dementia is an ongoing and sometimes emotional process . As care partner, you may be feeling overwhelmed by emotions that range from fear to hope. Emotions may be triggered by thoughts about how this diagnosis will impact your life, but also the anticipation of future challenges.
Emotions you may experience as a care partner:
· Denial: The diagnosis may seem unbelievable or difficult to accept. Short-term denial can be a healthy coping mechanism that provides time to adjust, but staying in denial too long can prevent you and the person with the disease from making important decisions about the future. It also can delay his or her ability to live a quality life. If you are experiencing denial about the diagnosis, your ability to help the person with dementia will be hampered until you can come to terms with the diagnosis yourself.
· Fear: Fears about the progression of the disease and the challenges in providing future
care can be overwhelming and can prevent you from focusing on the present.
· Stress/Anxiety: Uncertainty about what to expect as the disease progresses and how to support the person with the diagnosis can lead to increased stress.
· Anger/Frustration: Anger towards the diagnosis is a common response to feeling a loss of
control over the future. You may be feeling resentment about how your role as a care partner will impact your life.
· Grief/Depression: Sadness or a sense of loss over your relationship may also lead to
feelings of hopelessness. Learn more about symptoms of depression
Early Alzheimer’s in parent exacts heavy toll on young adult children
· “The signs were subtle at first. Then obvious. Then terrifying and heartbreaking all at once”.
· “Each of these three women knew that something was very wrong with her mother. Yet, until doctors pronounced the diagnosis as early Alzheimer’s disease, dementia seemed out of the question. Their mothers were just too young — and so were they, these adult children whose lives changed profoundly just as, in some ways, their lives were about to begin”.
· “Suddenly, I was facing a life path I really hadn’t considered before,” Cooke said, recalling the day her mother received the diagnosis of early dementia. “I was facing losing my mom to a pretty horrible disease. I don’t think people are ever ready for something like that, but I certainly wasn’t ready for that, at 24, that day.”
· “Young adult children also bear a terrible burden. Twentysomethings — those who only recently tasted independence and those who still lean on their parents from time to time
— can find themselves thrown into the unfamiliar role of their parent’s caregiver”.
· Some put their lives on hold, postponing graduate school or marriage. Others pass up job opportunities that would take them away from home. Just as often, they feel pressure to get on with major milestones, to accomplish the big things in life before their stricken parent departs.
· Ex: With her mother sick, Karceski felt guilty about continuing with her schooling and put it off for several years.
· “You just find yourself in this suspended state for years because you don’t know how to move forward...”
· “I totally fell apart. I got on the phone with my best friend and sobbed,” Cooke said. Since then, Cooke said, her life has been a lesson in accepting what she can control and what is beyond anyone’s control. And she struggled to balance her career with her duties as a caregiver.
·
· “I’ve spent a lot more time than I would otherwise with my mom. I’ve had to face parent mortality and caregiving at an age when a lot of my peers weren’t doing this,” Cooke said.
Hospice Care For Alzheimer’s
· Hospice is a special way of caring for people who are terminally ill — and for providing support to their family. The primary purpose of hospice care is to manage pain and other symptoms during the last six months of life where treatments focus on comfort rather than curing the underlying disease.
· Hospice care is provided by a team of specially trained providers, including doctors, nurses, home health aides, social workers, counselors, clergy and volunteers. Family is often very involved in the care.
· The majority of hospice care is provided at home or in a nursing facility.
· because hospice is typically reserved for people who have fewer than six months to live, Alzheimer's patients (who often have uncertain final time trajectories) or their caregivers have sometimes had to do some lobbying to get medical personnel to back their choice and hospice providers to provide the service.
· How long can my loved one stay on hospice care? Two periods of 90 days each or an unlimited number of 60-day periods.
When is the right time to ask about hospice?
Considering the slow decline of a patient with alzheimer’s, it can be difficult to determine when the time is right for hospice. In general, hospice patients are thought to have six months or less to live. Only a doctor can make a clinical determination of life expectancy. However, look for these common signs that the disease has progressed to a point where all involved would likely benefit from hospice care for dementia:
· The patient can say only a few words
· The patient can no longer walk and may be bed-bound
· The patient is totally dependent on others for eating, dressing and grooming
· The patient shows signs of severe anxiety https://www.vitas.com/hospice-care-services/conditions/dementia-alzheimers
·
Adult children tell me that if they bring up the subject of end-of-life planning, their parent will think they want to “push them aside” or “be done with them.” Spouses have told me that they worry that even thinking about it will somehow hasten death or cause their partner to die sooner. The reality is, given the right opportunity, those living with illness and frailty often welcome the opportunity to share their preferences about their end-of-life choices. Listening without judgment to the individual’s worries or advice can be a gift to them. Researching what is available to help care for a family member living with advanced illness relieves the individual from having to do the work themselves.
--https://www.pbs.org/newshour/nation/hospice-care-might-benefit-loved-one-sooner-think
Parent as Caregiver
Ex2: Chris,a daughter caregiver writes a letter for her mother who has Alzheimer’s and to her children:
“My mother is losing her mind. The most independent, emotionally repressed person I’ve ever known has become entirely dependent on others and lost the ability to hide her emotions. She understands her cataclysmic loss, but can’t process it at a conscious level. So the emotional expression of her loss is wild and unmoderated, as the subconscious is wont to be.
It’s painful to watch, and it’s painful to play my role in the final act of her life. My step-father and I struggle, with ourselves and with each other, to balance her seemingly irrational, insatiable needs with ours. The struggle is day-to-day, crisis-to-crisis.
We plan for our financial end with retirement accounts, for our medical end with advanced directives, and for our corporeal end with burial plots. We don’t plan for the end of our minds”.
Here is what the caregiver daughter wrote for her children:
“If the time comes when I’m no longer who I used to be, help me live my life, but also set boundaries for living your own. My life is almost over and yours isn’t, so save yourself. I love you more than you could imagine, unless you’ve had your own children. Then you understand.
Take care of me only as long as you can take care of yourself too. Don’t try to do everything. Before the chaos overwhelms you, get as much help as you need, as quickly as you can.
When I cry and rail against the world because I’m sad and angry and frustrated, listen to me and reflect my emotions back to me. Don’t try to solve my problems, because they are unsolvable. Remember when you were a teenager and you got angry — about me, or your friends, or your dad, or the boy who spilled a chili dog all over your backpack? I (mostly) stayed calm and listened. Do that for me now.
Sometimes I’ll seem perfectly normal, and you’ll forget that crazy is just around the corner. Don’t forget. I’m on a roller coaster, and I don’t want you to ride this last one with me.
When I call you 7 times a day, answer once if you can, more if you feel like it. But whatever you do, don’t answer 7 times.
When I beg you to help me, know that you can’t take away all of my pain no matter what you do. Don’t try so hard that you hurt yourself.
When I get angry at you, remember all the ways I’ve told you and shown you my love, and hold them close. That’s the real me.
Remember that you’re grieving the loss of me even though I’m still alive. Grief is messy. You’ll be mad at yourself for the things you didn’t do for me. You’ll be mad at me for the ways I failed you. That’s ok, I know. Be kind to yourself.
When it all becomes too much, it’s okay to put me somewhere nice where people can take care of me. The new me is afraid, wanting to depend on you and no one else. But the real me wants your happiness, even if mine is diminished in the moment. I’m still playing the long game, even though it’s almost over.
Pain and confusion may turn me inward, making me forget everything else. So I’m telling you this now, while I still can. Because the real me loves you deeply, selflessly, and forever.
Budget: 5 years ($129.5 Million Total Project Funding)
· Look at what NIH is doing. Has the funding increased since 18 months ago. Have there been any changes in attention and in funding?
· NIH Alzeihmers funding increased by over 100% from 2014 to 2017 and then decreased again in 2018 by almost 50%. Yet, funding for other diseases in general decreased as well.
· https://report.nih.gov/categorical_spending.aspx
· Compare now to 5 years ago. How does it compare to other diseases (funfing)?
· https://report.nih.gov/categorical_spending.aspx
For every $28,000 the federal government spends on care for Alzheimer's disease patients, it only spends $100 on Alzheimer's disease research. Federalfunding of Alzheimer's research is an inadequate $498 million, and does not reflect the escalating national epidemic of Alzheimer's disease.
Medicare is a federal program that provides health coverage if you are 65 or older or have a severe disability, no matter your income. Medicaid is a state and federal program that provides health coverage if you have a very low income.
Medicare does not have any program to pay a family caregiver. Medicare has only limited coverage for home care, and when it does cover home care it does so through a Medicare-certified home health care agency. It does not pay independent caregivers, family or otherwise.
This Medicaid home and community based services waiver in Florida is specially designed to provide care for individuals with Alzheimer’s disease in the community. The ADW helps keep patients at home longer with their loved ones enhancing their quality of life and avoiding the costs of nursing home placement.
The Alzheimer's Disease Initiative (ADI) supports patients in memory disorder centers which are located regionally. These clinics specialize in the testing, diagnosis, treatment and research on the debilitating brain disease.
CONGRESS DELIVERS HISTORIC ALZHEIMER’S RESEARCH FUNDING INCREASE FOR SECOND CONSECUTIVE YEAR
Alzheimer’s Association and Alzheimer’s Impact Movement Call to Congress to Increase Alzheimer’s Researching Funding at the NIH by $400 Million Answerered.
WASHINGTON, D.C., May 1, 2017 – Today, the Alzheimer’s Association and the Alzheimer’s impact Movement (AIM) are celebrating the announcement that Congress will pass a $400 million increase for Alzheimer’s research funding at the National Institutes of Health (NIH) in the FY2017 budget. This marks the second consecutive year that Congress has approved a historic funding increase for Alzheimer’s.
Alzheimer’s is the only leading cause of death that cannot be prevented, slowed or cured, and leading independent researchers have determined it has become the nation’s most expensive disease, with costs for this year alone projected to be $259 billion. In 2016, for every $100 the U.S. government spent on Alzheimer’s research i t spent $16,000 in Medicare and Medicaid costs caring for individuals living with this fatal disease. When the $4 00 million increase is signed into law later this week, Alzheimer’s research funding at the NIH will be nearly $1.4 billion. Leading experts have said this FY2017 increase was needed to remain on track to meet the first goal of the National Plan to Address Alzheimer’s — to effectively treat and prevent Alzheimer’s by 2025.
Additionally, the ADI includes services provided by Memory Disorder Clinics (MDCs). The MDCs provide comprehensive diagnostic and referral services for persons with Alzheimer's disease and related disorders. The MDCs had over 17,685 office visits during fiscal year 2016-2017 and provided telephone counseling, information, and support 20,325 times. The Memory Disorder Clinics routinely conduct community memory screening events that are free to the public. Individuals are screened, provided a score with an explanation of the results, and advised to follow up with their own physicians. A total of 1,747 memory screens were recorded last fiscal year, and 27,598 referrals were made on the behalf of clients and caregivers.
The state of Florida has designated and funded 15 Memory Disorder Clinics that provide comprehensive assessments, diagnostic services, and treatment to individuals who exhibit symptoms of Alzheimer's disease and related memory disorders.
http://www.smartbrainaging.com/research/ http://elderaffairs.state.fl.us/doea/alz.php
https://www.alz.org/documents_custom/historic-funding-2017.pdf
