#1 –  It is currently the 6^th leading cause of death in the U.S. and the only cause of death in the top 10 that cannot be prevented, cured or slowed down.

#2 – Every 68 seconds someone develops Alzheimer’s disease.

#3 – Over 5 million people are affected now by Alzheimer’s and it’s anticipated that 16 million will be living with the disease by 2050. 

#4– Currently, 15 million people are unpaid caregivers and that number will rise to 45 million by 2050. 

Fortunately there are more organizations specializing in training and support for the disease that is currently affecting 1 of every 8 Americans.

The Best Friends Approach™ to Alzheimer’s and dementia care offers a proven philosophy of care for caregivers and any person interacting with someone affected by Alzheimer’s and other related brain disorders. This organization conducts training for assisted living communities, local chapters of the Alzheimer’s Association and adult day centers. The basis of their approach focuses on socialization as the primary treatment of Alzheimer’s. They provide simple techniques for caregivers that can be incorporated every day to ensure that dignity and independence is the cornerstone of all care provided. 

The Best Friends Bill of Rights has been created to guide caregivers on how to be sensitive to the needs of those living with Alzheimer’s and dementia. This document should be a guide to care for individuals living at home as well as assisted living communities. If you are looking for a residential community for your loved one, you should ask if they promote the   Best Friends Approach™ to Alzheimer’s and dementia.

An Alzheimer’s Disease Bill of Rights

Every person diagnosed with Alzheimer’s disease or a related disorder

deserves the following rights:

• To be informed of one’s diagnosis
• To have appropriate, ongoing medical care
• To have expressed feelings taken seriously
• To be free from psychotropic medications, if possible
• To live in a safe, structure, and predictable environment
• To enjoy meaningful activities that fill each day and to be outdoors on a regular basis
• To have physical contact, including hugging, caressing, and hand-holding
• To be with individuals who know one’s life story, including cultural and religious traditions
• To be productive in work and play for as long as possible
• To be treated like an adult, not like a child
• To be cared for by individuals who are well trained in dementia care

Some services provided by patient advocates include,

• Help you prepare for and participate with you during a doctor’s appointment
• Provide care coordination between your multiple health providers during your illness
• Assist in researching top physicians, Centers of Excellence, and treatment options for your illness
• Ensure that you are receiving health care and financial assistance benefits as well as support services that you are eligible to receive
• Improve communication with your medical providers and family members to ensure that appropriate actions are being taken in a timely manner

Ken Schueler, who was considered the Father of Private Patient Advocacy, once said that cancer is like entering a foreign land. I agree with Ken that cancer, as well as other life-threatening diseases, is unfamiliar territory with its own language and protocols. As an advocate, it is my role to make the journey less intimidating and empower individuals and their families to take control instead of allowing a serious health condition to control them. I feel blessed to have the opportunity to utilize my strengths in helping people navigate to a better place. 

Click below to find more information about Private Professional Patient Advocates Week http://pppadvocatesweek.com/

A patient had parathyroid surgery. The parathyroid gland regulates calcium in the blood. A known side effect of this surgery is hypocalcemia, low calcium level in the blood.
The patient was discharged from the hospital without calcium supplements or instructions on potential complications and symptoms if a low calcium level develops. She returned to the hospital emergency room when her calcium level caused severe hypocalcemia symptoms. She was given excessive daily dosages of calcium and remained in the hospital until her condition stabilized. She was discharged from the hospital. Similar to her first hospital discharge, she was not given instructions on potential side effects. More importantly, her increased daily dosage of calcium was not reduced upon discharge. She went home continuing to take excessive amounts of calcium for many weeks. She returned to the hospital again when the increased calcium levels caused hypercalcemia symptoms which included kidney damage and several of her teeth fell out!

75% of hospital readmissions are preventable. Most of these are drug events which are preventable. Unfortunately, there is a breakdown of communication between medical providers, home health staff, nursing homes, family members and the patient. Medicine reconciliation is critical when you are discharged from the hospital. Typically, when you are admitted to the hospital your prescription drugs will change based on what the hospital uses. It is important for your health safety to reconcile your medications upon discharge to ensure that duplication and adverse side effects do not occur.

The Agency for Healthcare Research and Quality (AHRQ) recognizes this serious, yet common problem in hospitals and has addressed it by funding Project RED, Re-Engineered Discharge. Currently, approximately 250 hospitals are participating with more to follow. The program helps hospitals to educate patients on self-care and to improve hospital discharge communication to reduce overall hospital readmission. The program was initially developed by Boston University Medical Center to help solve their own discharge planning problems.

Common questions addressed in successful discharge planning include:

What should I eat?
What activities or foods should I avoid?
Where is my pharmacy?
What is my medical problem?
What are my medication allergies?
What medicines do I need to take? Why am I taking them? How much do I take?
How do I take this medicine?
When are my next appointments?
Questions for my next appointments

Remember, if you are a Medicare beneficiary and you do not feel that you are ready to be discharged or the post-discharge planning is not acceptable to you, you can appeal the decision. http://www.lifelongwellnessadvocates.com/are-you-being-discharged-from-the-hospital-too-soon/

Currently, Medicare patients have five or more chronic conditions. 75% of healthcare expenditures are for chronic care. Patients are going to be required to take an active role in managing their chronic illnesses. Many European countries have successfully implemented telehealth programs. Over the past two decades Denmark has been a leader in providing care at a distance to its citizens. In the U.S., the Veterans Administration has the most robust and well-received telehealth program currently available to address the needs of veterans, especially those located in rural areas. This has reduced travel time and emergency visits to medical facilities as well as loss of time from work. Monitoring of vital signs, blood pressure readings, glucose monitoring, pulse rate, and haemodialysis can all be conducted at home with results being delivered via text, email, videoconferencing and phone to medical personnel for review. An ePatch offers a revolutionary approach to obtain body measurements wirelessly. In-home rehabilitation therapy devices provide remote monitoring for therapists to evaluate progress and customize a home therapy program accordingly. Emerging technologies like mobile health apps will also play a major role as telehealth programs continue to rollout.    

You will see more companies providing diagnostic services to individuals for preventative health. This helps expedite the identification of areas of concern before a health crisis occurs. WellnessFX is one of these companies that are giving individuals the tools to help manage and control their own health with consultations from medical professionals. http://www.wellnessfx.com/

You should consider embracing self-care in 2012 because the best person to take care of you is YOU!

Medicare beneficiaries are able to utilize this appeal process since Medicare wants to ensure that each patient is receiving timely, quality health care. Medicare hires a Quality Improvement Organization (QIO) in each state to address health care quality concerns for their beneficiaries. The Center for Medicare and Medicaid requires hospitals to notify patients of their rights to appeal a decision for discharge. This written notification, which is called Important Message from Medicare, must be given to all patients to review and sign within the first 2 days of hospital admission. If you are in the hospital for more than 3 days, you will receive the notice again no less than 4 hours prior to your official discharge.

The timing that you file your request for appeal is crucial for the discharge process and has financial implications that affect you. If you have received official notice of your discharge date and you think it is premature, you must request your expedited review by noon of the next day. You must make your appeal no later than midnight on the date you are to be discharged while you are still in the hospital.

How do you appeal? The process to start the appeal is easy. All of the information is provided in the Important Message from Medicare notice that you reviewed and signed, or someone with your permission did on your behalf. The contact information for the QIO in your state is listed on the notice as well as instructions on how to file your complaint. The QIO that serves Colorado is the Colorado Foundation of Medical Care. Their direct phone number for the Medicare Beneficiaries Hotline for Complaints and for Expedited Review Requests is 800-727-7086.

How does this affect you financially? You can stay in the hospital while Medicare pays for your care until your appeal decision has been determined. Medicare beneficiaries are not financially liable for hospital costs while their case is being reviewed by the QIO (except co-pays and deductibles). If the QIO agrees with you that it is too soon for you to be discharged, then you can stay in the hospital and Medicare will cover your costs. If the QIO agrees with the hospital’s decision for your discharge, then you will be required to pay all hospital bills beginning at noon on the day AFTER notification of the decision was made. Patients do have the right to request an expedited reconsideration if they do not agree with the QIO’s decision. Initiating the appeal process buys you some time and can save you money while the QIO reviews your case. Typically a decision will be made within a few days. If you decide to not appeal the hospital’s decision for your discharge and you continue to stay in the hospital, you will be required to pay all hospital bills after the official discharge date.

So what is palliative care? By definition, palliative means providing relief. The goal of palliative care is to provide specialized pain management and symptom relief that occur from a chronic or serious illness. Individuals faced with health issues caused by cancer, heart disease, arthritis, dementia, kidney failure, or any other chronic or serious illness can benefit from palliative care.

Symptom relief and symptom management can include, but not be limited to, nausea, shortness of breath, emotional or physical pain, loss of appetite, sleep deprivation, anxiety and depression. Palliative care enables a person to improve their quality of life by focusing on both the physical and emotional well-being of a patient. A person of any age and at any stage of their disease process can receive palliative care.

Palliative care is a different service program than hospice. Many people are familiar with hospice services. Hospice is a program offered by local hospitals and nonprofit/for-profit organizations for end-of-life care. Hospice is a type of palliative care since they strive to reduce symptoms of a serious illness. However, hospice is used for individuals who have been diagnosed with a terminal illness and your physician feels that you have less than 6 months to live if your disease runs its typical course. Because of this prognosis, you are not able to continue medical treatments that may cure your disease if you are under hospice care.

On the other hand, palliative care does not require you to be diagnosed with a terminal illness or have received a prognosis of less than 6 months to live. More importantly, you are allowed to continue to receive medical treatments that may cure your disease.

Who pays for palliative care? Palliative care is typically an outpatient specialty service that bills under your Medicare Part B. Medicaid beneficiaries also are able to receive palliative care as well as some private health insurance plans will include coverage. Sometimes palliative care can occur in a hospital setting for a short period of time and then the care can continue at one’s own home. Unlike hospice care, Medicare does not cover the cost of palliative care drug prescriptions. If someone does not have the ability to pay for palliative care, most organizations will not turn away a patient that needs this service. You just need to ask!   

A palliative care team is typically available through a local hospice organization or a hospital-based palliative care team. More hospitals are embracing palliative care and building teams to service their patients. This program is inline with the current objective of hospitals and medical providers to focus on patient-centered healthcare and to treat the whole person.

In 2000, 24% of the U.S. hospitals had palliative care programs. In 2009, that number increased to 63%. Unfortunately, there are not enough palliative care specialists for the growing demand. Currently, there is one trained palliative care physician for every 1200 Americans living with a serious or chronic illness. The U.S. healthcare system currently pays doctors primarily for conducting procedures. Doctors are trained to cure a medical condition. But if a cure does not exist, a person still needs medical expertise on living with the disease and its symptoms. Many hospitals are trying to determine how to offer this service within their business model and still be profitable.

Recent research has shown that palliative care can reduce healthcare usage by $6 billion a year. A palliative care patient is less likely to be taken to an emergency room since regular, individualized care is provided. Furthermore, patients receiving palliative care are more likely to have discussed end-of-life decisions with their family and/or doctors. This equates to fewer patients being resuscitated or intubated against their will.

If you or a loved one is one of the 90 million Americans living with a serious or chronic illness, you should ask your doctor if palliative care will improve your daily life. A free consultation by a palliative care team is always an option if you want to better understand the scope of their services and your eligibility.  

Some trends that are occurring now in these communities and will continue to evolve are specialized memory care units. As the fifth leading cause of death for those aged 65 or older, Alzheimer’s disease will affect 16 million Americans by 2050. Alzheimer’s disease requires an enormous time investment from the caregiver. If those living with the disease can afford it, they can live full-time in an assisted living environment that specializes in Alzheimer’s and dementia.

The average monthly cost to live in an assisted living community is $3,270/month. This is for basic level of care. Prices vary greatly depending on location, room size, amenities, health issues and services offered. Personal finances affected by the U.S. economy combined with the cost to live in an assisted living community have brought about another industry trend – the timing when caregiving transitions from the family to a residential care community. To save money and delay the need to move into an assisted living community many seniors and their families are choosing to retrofit their own home to keep their loved one at home for as long as possible. This has led to the recent boom in home modifications for elder safety.

7 out of 10 individuals say that they are caring for a parent. 36% say that the person they are caring for lives with them. 55% of caregivers have been providing care for over 3 years. This has led to another trend. People are joining assisted living communities at an older age when health issues are more prevalent. Care coordination and communication between medical providers and family members is essential to ensure that a resident is getting quality medical care. Many assisted living communities are embracing third party partnerships with professionals in the community that can provide additional services to enhance each resident’s experience and improve quality of life. Independent patient advocates or medical navigators along with other health and wellness professionals are examples of third party partnerships.

You will begin to see more communities utilizing technology solutions for monitoring residents and communicating with medical providers. Some communities will cater to ‘environmentalism’ and promote their renewable and sustainable building products and living environment. Organic foods and gardening will be available at some select communities.

Several communities are already extending their reach to the local community. They are offering programs and services to individuals not residing at the assisted living community. For example, adult day care and geriatric medical providers are now located within some assisted living communities. Additional services that support the elderly still living in their homes will be offered at local assisted living communities. This provides another revenue stream to the communities and gives those living at home (future potential residents) an opportunity to see and experience the assisted living community firsthand.

Another trend you will continue to see is a continuum of care. Many communities want their residents to be able to ‘age in place’ and not have to relocate to another facility due to a decline in health and increase care needs. ‘Enhanced Assisted Living’ communities will have licensed nursing care available 24/7. A primary care manager may also be available for each resident to encourage individualized, relationship-based care.

The Eden Alternative, developed by Dr. Bill Thomas, has a philosophy for culture change in this industry that will continue to resonate and take hold within communities. The primary concept is to create a living environment for elders that will nurture them rather than being an institutional facility for the frail and elderly.

Assisted living communities have certainly evolved over the past 25 years to provide a myriad of choices for consumers and a more positive living environment for the elderly.

Dr. Bill Thomas has coined a term called Eldertopia which I hope many assisted living communities will embrace and find ways to incorporate within their own four walls.

Eldertopia/ell-der-TOE-pee-uh/noun: A community that improves the quality of life for people of all ages by strengthening and improving the means by which (1) the community protects, sustains, and nurtures its elders, and   (2) the elders contribute to the well-being and foresight of the community. An Eldertopia that is blessed with a large number of older people is acknowledged to be “elder-rich” and uses this wealth to advance the good of all.

A hospital is a new environment and that in itself is problematic for Alzheimer’s patients. When you add bright lights, loud noises and strangers rushing around, a confused Alzheimer’s patient requires additional care to ensure safety. Many medical facilities are not staffed with personnel that are trained to understand the complexity of Alzheimer’s behavior. When this occurs, some facilities use medication and/or restraints in an attempt to remove the behavior. To make sure that your loved one is safe and being treated respectfully and compassionately, it is critical to have a family advocate on-site or to hire someone to advocate on behalf of your loved one.

An advocate can assist in providing the increased supervision and care that your loved one needs during this time. A familiar face is crucial to minimize the risks associated with being in a hospital setting. Behaviors associated with Alzheimer’s disease and its symptoms can be more severe in a hospital environment. Unfamiliar people will be conducting tests at odd hours of the day and night. There could be some tests and procedures that may not need to occur at all. An alternative solution may be an option. Always ask on behalf of your loved one if a test/procedure is absolutely necessary.

Here are some key issues that need to be addressed:

Notify the medical personnel interacting with your loved one that he/she has Alzheimer’s. Many Alzheimer’s patients will not understand why they are in a hospital. This will add to the confusion and increase the stress level for all involved. Your loved one may become anxious, agitated and uncooperative. The medical staff may react negatively to this which will turn a bad situation to worse within minutes. Make sure that it is communicated to all shifts that your loved one has Alzheimer’s disease. Remind them that verbal communication is difficult for your loved one so they may feel pain or discomfort without verbalizing the symptom. Medical personnel need to look for other signs of pain or discomfort.

Try to get a private room. This will minimize noise and activity occurring in the room.

Be cognizant that the TV can increase the anxiety level for an Alzheimer’s patient. You may want to have it turned off a majority of the hospital stay.

Using the bathroom will be a major problem in a hospital environment. You should know where the nearest bathroom is and provide assistance to your loved one in locating it on a regular basis.

Once admitted, there could be tubes inserted into their body which will be a foreign object to an Alzheimer’s patient. The patient may try to remove tubes on their own.

Many Alzheimer’s patients will not understand or remember how to use a call button while lying in their hospital bed.

Bedside rails may be confusing to an Alzheimer’s patients as well as a safety issue if they attempt to climb over the rails.

The food selection and eating process at a hospital will be very different from what they are used to and can be difficult for an Alzheimer’s patient. Medical staff will not stay in the room to assist your loved one in eating.

60% of people living with Alzheimer’s wander. This is a common occurrence in hospitals so supervision is required at all times. 

It is unfortunate that a hospital stay may be necessary for a person living with Alzheimer’s. Safety and security should be your main concerns. Always assume that more help will be required for your loved one in a hospital setting than in their own home. If you keep this in mind and proactively manage the situation, the outcome will be more positive for you, your loved one, and the medical staff.

Campaign Zero, an organization that provides patient safety education for patients and their families, has developed some excellent checklists that can be very useful during this time. Click here to view the checklists. You can also visit http://www.campaignzero.org for more information.

Lyme disease can be prevented if early detection and antibiotics are given immediately. Don’t allow a physician to tell you that it is not possible for you to have Lyme disease in your geographic area. Lyme disease has been documented in every U.S. state.

Unfortunately, many people may not know that they received a tick bite to initiate a diagnosis and the treatment process. Furthermore, since Lyme disease is known as ‘the great imitator’ its symptoms mimic other chronic illnesses such as arthritis, chronic fatigue, fibromyalgia, heart problems, and neurological disorders like Bell’s Palsy, depression, and obsessive-compulsive disorder. Lyme bacteria bores into tissue, joints and the central nervous system. It migrates and affects many systems in your body so discomfort will spread beyond the original tick bite location. Symptoms are cyclical so approximately every 4 weeks you may experience symptoms when the bacteria replicates. To add to the confusion of diagnosis, Lyme disease can also be asymptomatic so that no noticeable symptoms may appear.

To further complicate the diagnosis and treatment process, ticks can carry more than one disease so a bite can cause co-infections. Antibiotics for one infection may not be effective for another infection.

Unfortunately, testing for Lyme disease is not always accurate. The most common forms of testing identify antibodies in your system. Antibodies are proteins that your body produces when it detects an antigen, a foreign substance (ie. bacteria) in your system. The ELISA test (enzyme-linked immunosorbent assay) is frequently used even though it misses 30% of the positives. If an ELISA test is performed, it is best to confirm its results with a Western blot test. However, both of these tests look for antibodies produced by your immune system. If your system has not produced antibodies it does not necessarily mean you do not have the antigen. Antibodies will not develop the first 4 weeks upon receiving the bite. In addition, if you wait several years to get tested, your immune system will not produce antibodies. An antigen capture test is becoming a more reliable diagnostic test for Lyme disease. It checks for the presence of the Lyme bacteria with or without the antibodies being present.

What type of doctor should be involved in your diagnosis and treatment? Ideally, a Lyme Literate Doctor or a Rheumatologist will provide a timely, accurate diagnosis and treatment. Other physicians may not be aware of the inaccuracies of the common diagnostic tests and they tend to be more conservative with the antibiotics prescribed to effectively eradicate the bacteria. 2-3 weeks of antibiotics is not enough to kill the bacteria before it replicates. Since some insurance companies may not pay for treatment if a positive test has not been received it is critical for your health and your bank account to avoid being misdiagnosed.

For more information about Lyme disease, My Lyme Guide is an excellent resource book and organizing tool to help you manage your illness. http://www.mylymeguide.com