YAAA! Young Advocates for the Alzheimer's Association Meeting & Social

PLEASE NOTE THE NEW LOCATION! Our next meeting is August 9th from 6-8pm in Phoenix. Please see below for more details and we will see you there! ~ Suzette

Applebees Neighborhood Grill & Bar

2547 N 44th St (just South of Thomas Rd)

Phoenix, AZ

YAAA!, Young Advocates for the Alzheimer's Association, will be having Monthly meetings every 2nd Tuesday of the month from 6:00-7:00 pm followed by a supportive social from 7:00 - 8:00 pm. Young adults 18-39 are welcome to attend! We will be reviewing current federal and state priorities of the Alzheimer's Association as well as any advocacy done by our YAAA! members for the previous month.

After the meeting we invite everyone to stay for our supportive social from 7:00 to 8:00pm to further bond with members, prospective members or just enjoy drink and food specials for happy hour! Please calendar this for future reference and let me know when you can make it. I am looking forward to seeing everyone!

YAAA! Facebook page: www.facebook.com/DSWYAAA

How key circuits in the brain control movement

A new study that has identified how key circuits in the brain control movement could treat movement related disorders, such as Parkinson’s disease. Scientists Anatol Kreitzer, PhD and Karl Deisseroth, MD PhD at the Gladstone Institute of Neurological Disease (GIND) and Stanford University used genetic methods to allow mice to produce a light-sensitive protein in very select group of cells in the brain.

Researchers found that the mouse with the fibre optics implanted in the brain moved normally with the laser turned off and froze when the laser was turned on. With the laser off, and the mouse’s movement was restored. “It’s not something we can do for just a second,” Kreitzer said. “We can do this for as long as the laser is on.” “We generated mice that lacked dopamine, and these mice showed many of the same symptoms found in humans with Parkinson’s disease. But when we activated the ‘go’ pathway in these mice, they began to move around normally again. We restored all of their motor deficits with this treatment, even though the mice still lacked dopamine,” he added.

The research could be important for treating Parkinson’s and also other disorders involving these circuits, such as Huntington’s disease, Tourette’s syndrome, obsessive-compulsive disorder, and addiction.

By http://www.thehindu.com/

The research is published in the journal Nature.

Missed and Delayed Diagnosis of Dementia in Primary Care: Prevalence and Contributing Factors

Dementia is a growing public health problem for which early detection may be beneficial. Currently, the diagnosis of dementia in primary care is dependent mostly on clinical suspicion on the basis of patient symptoms or caregivers' concerns and is prone to be missed or delayed. We conducted a systematic review of the literature to ascertain the prevalence and contributing factors for missed and delayed dementia diagnoses in primary care. Prevalence of missed and delayed diagnosis was estimated by abstracting quantitative data from studies of diagnostic sensitivity among primary care providers. Possible predictors and contributory factors were determined from the text of quantitative and qualitative studies of patient, caregiver, provider, and system-related barriers. Overall estimates of diagnostic sensitivity varied among studies and seemed to be in part a function of dementia severity, degree of patient impairment, dementia subtype, and frequency of patient-provider contact. Major contributory factors included problems with attitudes and patient-provider communication, educational deficits, and system resource constraints. The true prevalence of missed and delayed diagnoses of dementia is unknown but seems to be high. Until the case for dementia screening becomes more compelling, efforts to promote timely detection should focus on removing barriers to diagnosis.

By Bradford, Andrea MA; Kunik, Mark E. MD; Schulz, Paul MD; Williams, Susan P. MD; Singh, Hardeep MD, MPH

Huge wave of dementia cases coming, warns report

By CTV.ca News Staff

So many Canadians are expected to develop Alzheimer's disease and dementia in the next 30 years that a new case will develop every two minutes unless preventive measures are taken, a new report says.

The report, released Monday by the Alzheimer Society, says the prevalence of dementia will more than double in the next 30 years.

By 2038, almost three per cent of Canada's population will be affected by dementia, and about 257,800 new cases will be diagnosed per year.

Today, dementia costs Canada about $15 billion a year; those costs could soon increase by 10-fold.

"If nothing changes, this sharp increase in the number of people living with dementia will mean that by 2038, the total costs associated with dementia will reach $153 billion a year," David Harvey, principal spokesperson for the Alzheimer Society project called "Rising Tide: The Impact of Dementia on Canadian Society," said in a statement.

That amounts to a cumulative total of $872 billion over the 30-year period.

Much of the increase in cases can be attributed to the "greying" of Canada. With Canadians living longer and baby boomers aging, there is expected to be a spike in many chronic diseases that come with age, such as heart disease, arthritis and cancer.

But the expected rising rates of dementia are not just about demographics; poor lifestyles also play a role.

It's been well documented that regular physical and mental exercise can delay the onset of dementia, which includes Alzheimer's disease and other progressive diseases that destroy brain cells. For that reason, the report recommends that all Canadians over 65 without dementia increase their physical activity by 50 per cent.
"Prevention is where we need to be starting," Harvey told Canada AM.

"We know that healthy eating and active living are antidotes to dementia."

The "Rising Tide" report calls on government to fund more health promotion to remind Canadians of the benefits of a healthy lifestyle.

"This intervention would reduce the number of people diagnosed with dementia, resulting in a reduction in the pressure on long-term care facilities, community care services and informal caregivers," the report says.

Need for national strategy

Just as important, Harvey says, is the need for Canada's health care system to adapt to accommodate the projected rise in dementia cases.

"Dementia is one of the leading cases of disability amongst older people," Harvey said, noting that the flood of dementia expected in the next 30 years could overwhelm emergency rooms and hospitals.

His group's report calls for more support for informal caregivers -- generally, family members -- who tend to be the ones who care for patients with dementia in the early stages of the disease.
"There are services that can be put in place to support caregivers, and also economic and financial support for caregivers," he said.

By also providing caregivers with skill-building and support programs, caregivers struggling with the overwhelming emotional and financial hardships of providing care may feel better equipped to care for their loved one.

That could go far to delay admission of patients into long-term care facilities, thereby lessening the burden on the health care system.

The report also suggests assigning "system navigators" to each newly diagnosed dementia patient and their caregivers. These case managers would help families navigate the health system to find the right social services for their loved one depending on their stage of dementia.
Some facts about dementia:

The symptoms of dementia include a gradual and continuing decline of memory, changes in judgment or reasoning, mood and behaviour, and an inability to perform familiar tasks.
Dementia can strike adults at any age, but has traditionally been diagnosed in people over 65. However, symptoms start much earlier, and an increasing number of people are being diagnosed in their 50s and early 60s.

Age is the number one risk factor for dementia

Alzheimer's disease, the most common form of dementia, accounts for approximately 64 per cent of all dementias in Canada.

Other related dementias include Vascular Dementia, Frontotemporal Dementia, Creutzfeldt-Jakob Disease and Lewy body Dementia.

There is no known cure for dementia. However, some medications can delay progression of the disease.

Researchers are confident that within five to seven years, there will be treatments that attack the disease process itself, not just the symptoms.

How to decide if your family needs a geriatric-care manager

By Anya Martin

DECATUR, Ga. (MarketWatch) -- The holidays should be a joyful time of homecoming for families, but sometimes those visits also reveal that elderly parents are more frail or more forgetful than before. Discoveries like these may suggest that it's time to consult a geriatric-care manager.

When Nancy Gratzel's mother had a sudden change in her health requiring placement in a nursing home, Gratzel and her four siblings found themselves overwhelmed by the complex paperwork to qualify for Medicaid coverage. So they turned to Stephen Mielach, a geriatric-care manager based in their community of Toms River, N.J.

"It's a very cumbersome process because you have to find all your parents' documents and follow the trail of their money over the past five years," Gratzel said. "I decided that my time constraints didn't allow me to attend to that. I commute to work, have long work days, and all my siblings are married with children and very active."

Now Mielach also shares a power of attorney with Gratzel to assist her 88-year-old father, now living on his own, with bill-paying -- a task that his wife used to perform exclusively. Her father appreciated the help and began to look forward to Mielach's visits, she said.

"To me, that was a good use of my parents' money which we were going to have to spend anyway [to meet Medicaid qualifications]," Gratzel said. "It afforded me the opportunity to direct my energy towards nicer things, helping my mom adjust to the facility and my dad to living at home alone. They had been married 67 years."

While most seniors and their families do not go so far as to assign power of attorney to geriatric-care managers, members of this growing profession can assist not just with money matters but also with navigating the often complicated decisions about what care is best for mom, dad or another relative.

Sometimes they help resolve a short-term challenge such as Mielach did initially for Gratzel's mother or they may provide assistance over a period of months or years. Sample tasks range from vetting home health aides to assessing whether a senior is able to remain at home or needs to relocate to an assisted-living community or nursing home. They may also accompany seniors to medical appointments and ensure they receive the prescribed follow-up such as lab tests and radiology scans or find contractors and coordinate bids for home repairs, for instance.

Or when a senior has no spouse or children, a geriatric-care manager may take on even more responsibilities to fill that void.

"For people who have family, I become the expert in the family," Mielach said. "For those with no family, I become family for hire."

Boomers' aging parents spur demand

The profession of geriatric-care manager has been around for decades but really has taken off in the past 10 years as the baby boomers increasingly became long-distance caretakers of elderly parents, said Joyce Gray, a Philadelphia-based certified geriatric-care manager who serves on the board of the National Association of Professional Geriatric Care Managers, the industry's trade association. The group's membership has grown from 50 to 2,000 since its 1985 founding.
"There are a lot more older people who don't have someone locally to look after them," Gray said. "The baby boomers also are more used to paying for services and expecting high quality and results."

Another change Gray has noticed is that more people are contacting her proactively rather than in the middle of a crisis such as a broken hip or an Alzheimer's diagnosis, she said.
A decade ago, Ron Fatoullah, a New York-based certified elder law attorney, rarely recommended that his clients consult a geriatric-care manager. Now he refers at least one-third to see one, if only to validate that seniors and their family are making the appropriate care and financial decisions for their health and happiness.

"I have to know that my client is placed in the right facility, and if they're going to be at home, that it's the proper environment with all the safety features they need," Fatoullah said. "The care management assessment heavily dictates how I do my legal work."

In the case of Gratzel's mother, all family members agreed she needed nursing home care. However, geriatric-care managers also can be valuable third-party referees, providing an impartial viewpoint to siblings or children and a parent with different opinions about what is best for the senior, Fatoullah said.

"I've seen a reluctance among seniors to want any care, and if a child mentions it, the parent may bite the child's head off," he added. "But some geriatric-care managers are very good with seniors and letting them know in a constructive way that they do need care."

A background in nursing or social work

Most geriatric-care managers come to the profession from nursing, social work or a handful of other fields related to geriatrics or long-term care, according to NAPGCM.

Before launching his geriatric-care management practice 20 years ago, Mielach, a licensed clinical social worker, was director of social work at a hospital. During that time, he became an expert in tracking down relatives of seniors who were admitted to the hospital and did not have obvious family members. Those responsibilities eventually led to him becoming a court-appointed guardian when no relatives could be found, and he realized that he enjoyed not just the detective work but the chance to improve people's lives.

Mielach even accompanied one New Jersey woman with dementia across the country to move into a New Mexico assisted-living community near close friends.

He also sometimes serves as a health proxy, a legal status which allows him to make medical decisions based on a previous consultation as to the seniors wishes, he said. In a recent example, a client of 12 years had a stroke which robbed her not just of mobility but the ability to speak, and Mielach had to inform the EMS team that she did not want to be taken to the hospital.
"I always go into detail about what values you have so if a situation comes up, I can make decisions consistent with your values," Mielach said. "But in 20 years of doing this, I have never been so confident that someone did not want treatment as with this woman."

Geriatric-case managers typically charge by the hour, and rates vary from $80-$200/hour depending on location, Gray said. Most also charge an initial assessment fee ranging from $300-$800, she added.

Some geriatric-care managers may also agree to a lump sum for a particular service. For example, Mielach charges between $1,000 to $5,000 to research and prepare a Medicaid application, depending on the complexity involved.

While health insurance policies do not cover care-management services, some long-term-care policies do.

How to find a care manager

In the past, finding a geriatric-care manager was very much through word-of-mouth referrals, and asking a hospital discharge planner, psychiatrist or elder law attorney for suggestions in your community is still one good way to start, Gray said.

Another option is to consult NAPGCM's nationwide directory at its Web site, http://www.caremanager.org/. As of January 1, 2010, all NAPGCM members are required to have at least one of four professional certifications: Care Manager Certified (CMC), Certified Case Manager (CCM), Certified Social Work Case Manager (C-SWCM) and/or Certified Advanced Social Work Case Manager (C-ASWCM).

One red flag would be care managers who say they got into the field after helping their own relative but don't have much other experience or have not committed the time to get professional training, Gray said.

You should also be sure to ask for references, and most care managers will offer a free 20- to 30-minute telephone interview so families can get a sense of how they work, their fee schedule and whether their personality is a good match, she added.

"It's important to have a sense of trust right from the start that you can work with this person and that your mother, father, aunt, uncle can work with them, too," Gray said.

More questions to ask include whether the geriatric-care manager is part of a solo or group practice and who covers for them if they are away, she added. Are they available 24 hours a day and on weekends, because that is when many falls and other health crises occur?
Finally, don't hire anyone who accepts financial rewards from nursing homes, home health agencies or other providers. Such practices are directly in conflict with NAPGCM's ethical standards and suggest that the geriatric-care manager may not have a seniors best interests at heart, Gray said.

Dementia and How it is Diagnosed

Many of us may from time to time, forget our neighbor’s name or the items to purchase at the grocery store, and we wonder if this is part of normal aging. Your doctor is the best person to speak with regarding these concerns. There are many conditions that are treatable that may be contributing to periodic memory lapses.

Often when we think of dementia we think of Alzheimer’s disease. While Alzheimer’s disease is considered to be the underlying cause of between 60 and 80% of all dementia cases, there are also other conditions that might cause dementia. It is important to know about the other types and causes of dementia because treatment can vary between diseases and early detection can be beneficial in slowing the progression of incurable dementia's.

According to Dr. Harvey Gilbert, MD of the Gilbert Guide, some of the most common types of dementia and their causes are:

1. Vascular Dementia
This type of dementia is the second most common. It is caused by poor blood flow to the brain, depriving brain cells of the nutrients and oxygen they need to function normally. Vascular dementia can be caused by any number of conditions which narrow the blood vessels, including stroke, diabetes and hypertension.

2. Mixed Dementia
Sometimes dementia is caused by more than one medical condition. Most commonly, mixed dementia is caused by both Alzheimer's and vascular disease.

3. Dementia with Lewy Bodies (DLB)
Sometimes called Lewy Body Disease, this type of dementia is characterized by abnormal protein deposits called Lewy bodies that develop in nerve cells in the brain stem. This disrupts the brain’s ability to function normally and impairs cognition and behavior. It can also cause tremors and is often linked with Parkinson’s Disease and dementia. It is not reversible and there is no known cure.

4. Parkinson’s Disease Dementia (PDD)
Parkinson's disease is a chronic, progressive neurological condition, and in its later stages can affect cognitive functioning. Not all people with Parkinson’s disease will develop dementia, however. This type of dementia is also a lewy body dementia. Symptoms include tremors, muscle stiffness and speech problems. Reasoning, memory, speech, and judgment are also usually affected.

5. Frontotemporal Dementia
Pick's disease is the most common and recognized form of frontotemporal dementia. It is a rare disorder which causes damage to brain cells in the frontal and temporal lobes. This affects the individual’s personality significantly, usually resulting in a decline in social skills, along with emotional apathy. Unlike other dementia's, Pick’s disease usually results in behavior and personality changes occurring before memory loss and speech problems.

6. Creutzfeldt-Jacob Dementia (CJD)
A degenerative neurological disorder, CJD is also known as “mad cow disease”. The incidence is very low, occurring in only about one in one million people. There is no cure. Caused by viruses, CJD progresses rapidly, usually over a period of several months. Symptoms include memory loss, speech impairment, confusion, muscle stiffness and twitching, and a general lack of coordination, which makes the individual susceptible to falls. Sometimes blurred vision and hallucinations also occur with this form of dementia.

7. Normal Pressure Hydrocephalus (NPH)
Normal pressure hydrocephalus involves an accumulation of cerebrospinal fluid in the brain's cavities. When this fluid does not drain as it should, the associated build-up results in added pressure on the brain, interfering with the brain’s ability to function normally. Individuals with dementia caused by normal pressure hydrocephalus often experience problems with ambulation, balance and bladder control, as well as cognitive impairments involving speech, problem-solving abilities and memory.

8. Huntington’s Disease
Huntington's disease is an inherited progressive dementia that affects the individual’s cognition, behavior and movement. Symptoms include memory problems, impaired judgment, mood swings, depression and speech problems (especially slurred speech). Delusions and hallucinations may also occur. Individuals with Huntington’s disease may also experience difficulty walking, and uncontrollable jerking movements of the face and body

9. Wernicke-Korsakoff SyndromeWernicke-Korsakoff syndrome is caused by a vitamin B1 (Thiamine)deficiency and often occurs in alcoholics, although it can also result from malnutrition, cancers, abnormally high thyroid hormone levels, long-term dialysis and long-term diuretic therapy (used to treat congestive heart failure). The symptoms include confusion, permanent gaps in memory, and impaired short-term memory. Hallucinations may also occur. If treated early by supplement, this dementia can be reversed.

10. Mild Cognitive Impairment (MCI)
Dementia can be due to illness, medications and a host of other treatable causes. With mild cognitive impairment, an individual will experience memory loss, and sometimes impaired judgment and speech, but they are usually aware of this decline. These problems usually don’t interfere with the normal activities of daily living. Individuals with mild cognitive impairment may also experience behavioral changes that involve depression, anxiety, aggression and emotional apathy. This is often due to the awareness of and frustration related to his or her condition.

With an understanding of the types of dementia, questions begin to arise about how these diseases are diagnosed. What can a patient expect when trying to determine whether he or she has some form of dementia? What can a caregiver expect?

When you initially meet with your doctor, it is important to be honest with them about the symptoms the patient is experiencing, their duration, frequency and rate of progression. The doctor will then review your current health status, family history and medication history. This includes evaluating the patient for depression, substance abuse and nutrition, and other conditions that can cause memory loss, including anemia, vitamin deficiency, diabetes, kidney or liver disease, thyroid disease, infections, cardiovascular and pulmonary problems. The patient also undergoes a physical exam and blood tests. Diagnosing specific diseases causing dementia can be difficult and it may be necessary to ask for a referral to a doctor with expertise in this area. Additional tests that may be used in conjunction with the aforementioned approaches include the Mini Mental State Evaluation (MMSE), the Mini Cog Screen, and Medical Imaging (CT, MRI and PET scans).

The MMSE is an evaluation of the patient’s cognitive status. The patient is required to identify the time, date and place where the test is taking place, be able to count backwards, identify objects previously known to him or her, be able to repeat common phrases, perform basic skills involving math, language use and comprehension, and demonstrate basic motor skills.
The Mini Cog Screen takes only a few minutes to administer, and is used as an initial screening for dementia. The patient is required to identifying three objects in the office, then draw the face of a clock in its entirety from memory, and finally, recall the three items identified earlier.
Finally, medical imaging helps doctors see images of the patient’s brain to determine whether there are any growths, abnormalities or general shrinkage which occurs in Alzheimer’s disease. These medical imaging tests can help improve the accuracy of a dementia diagnosis to 90%.

Once a diagnosis has been made, doctors can help patients to look at various treatment options and can often provide information for caregivers and families about support groups and organizations that can provide them with information about their specific diagnosis. It is recommended that patients and their families try to learn as much as they can about the disease and how it is expected to progress. Organizations like Alzheimer’s Association or the Parkinson's Society can provide valuable information about the disease, its progression and tips on how to slow the progression of the disease and deal with symptoms. These organizations also provide support groups to both the patient and their caregivers to help deal with the blow of a dementia diagnosis. As mentioned earlier, early detection is often key in being able to reverse or slow the progression of many of these diseases. Having a basic understanding of the many dementia's that may occur and how they are diagnosed will be beneficial to physicians and families alike.

If you find that you simply do not know where to begin or how to handle this change in status and what it means for your future, a Geriatric Care Manager can assist you in making plans for the future.

For information on Care Managers in your area go to http://www.caremanager.org/ or for a care manager in Maricopa County click here.

By ElderCaring.ca