AD From The Front Lines: My Thoughts And Views

On November 8th 2011, the Alzheimer’s Association released a copy of a report entitled, Alzheimer's from the Front lines: Challenges a National Alzheimer's Plan Must Address.  It was presented in a briefing made upon Capitol Hill.  The report involved the contribution of over 43,000 of our citizens nationwide from May through October 2011. 150 members of the Senate and the House of Representatives attended public input gatherings that were initiated throughout the country. 64 Chapters of the Alzheimer’s Association across the country participated by hosting local level public input sessions.  

After downloading and reading a copy of this report, I felt compelled to write about the issues it raised. I also chose to  quote substantially from the dozens of frank town hall opinions that were included by caregivers from across the country.

Challenges That Emerged From Public Input

1.    Lack of public awareness

A substantial number of our citizens, out of ignorance, continue to view AD as “a normal part of the aging process”. This is unacceptable and underscores the continuing need for education about AD.  

My Contention

Alzheimer’s Disease is not part of the normal aging process. It is a a breakdown of one of the chemical activities that occurs within neuron (brain) cells. Presently the causation appears to be associated with family genetics, with the toxic buildup of certain combinations of protein molecules, and perhaps lifelong exposures to yet to be ascertained environmental conditions.

People are fired up and receptive to learn about or participate in breast cancer and autism awareness. This is a good thing, however, where is that same level of passion and interest for AD?  We are a society that appears to be wrapped up with children, with youth and with those under 30.  What about the other end of the age spectrum?  News flash: you’re gettin older every day. Eventually all our young folks now will be facing their 50’s, 60’s and 70’s.  What are you going to do then?

2.    Insufficient research funding

Two quotes from the report are presented here.

“The best hope we have of stemming this epidemic is through investments in research now. Right now, federal funding for Alzheimer’s research is at a historic low, with less than 1 in 10 grants submitted actually funded. The total amount on investments into Alzheimer’s research needs to increase substantially from the $450 million today to $1 to $2 billion in order to translate today’s basic research findings into tomorrow’s treatments.” --Cleveland, Ohio

“Most people affected by the disease find a way to meet the challenges, with or without public support.  But they can’t find the cure. That takes qualified researchers. Public investment in research should be job one.”  Moline, illinois

My Contention

Money and funding are the grease that provide for movement, momentum and medical research breakthroughs to take place.  A LOT more is needed. 

3.    Difficulties with diagnosis

Language barriers exist between our diverse ethnic populations that often hinder patients from obtaining a definitive diagnosis of AD.

Participants in this national dialog and fact gathering mission told of having to visit doctor after doctor before finding one that was willing to make a diagnosis.

My Contentions

Since the first clinical diagnosis of AD in 1905, the only verifiable means of determining the presence of Alzheimer’s Disease has been post-mortem: that is, performing a brain autopsy after death.  

Within the past 5 years, one of the hotbeds of medical research has been the development of imaging techniques and dyes that allow doctors to actually view plaques and tangles within a living patient.  Work remains in standardizing and adapting this new technology. 

Early AD detection methods that rely upon bodily fluids such as saliva, blood, and cerebrospinal fluid still need further refinement and enhanced diagnostic accuracy before they can be standardized and made available at an affordable cost to the public.

Insurance companies must be called upon to  find ways of extending health insurance coverage that will pay for the cost of coverage of this critical diagnostic tool.  

More standardized  dementia and Alzheimer’s disease educational materials needs to be composed, printed and made available in such languages as  Spanish, Tagalog, and Russian to name just a few.

4.    Poor dementia care

Many people pointed to the need for a care coordinator who could counsel a newly affected family through the care process and could also describe potential challenges ahead. Such a person would have been helpful, they suggested, in addressing the many questions and relatively few answers that often accompany a new diagnosis.

More contributing opinions such as these were offered.

“Having a care manager available to assist in accessing services would be very helpful, similar to what occurs for individuals with other chronic medical conditions (diabetes, COPD, asthma, chronic kidney disease).” -- Ludlow, Massachusetts

“People with diabetes get a diagnosis and are automatically referred to a diabetes health educator.  People with Alzheimer’s or a related dementia should have access to a comparable service (dementia care management) that is paid for by insurers including Medicare.” -- Los Angeles, California

My Contention

The eventual need for long term nursing home care is a major issue for families providing for a loved one now at home. Eventually, as a person sinks deeper into AD, the placement of them in a care facility becomes mandatory. The family simply can no longer cope with the 24 hour a day care and medical demands required of them.  The majority of caregivers still must maintain some kind of employment and may not be in a position to consider any kind of retirement. They need a resource to turn to. 

One resource needs to be affordable insurance covered long term care coverage.  Insurance companies already offer and issue such policies. Most however have a current maximum limit of only 5 years.  Insurance providers need to consider offering policies with extended ranges of coverage  up to 7 to 10 years, and, be affordable.

5.    Inadequate treatments

Here are more town hall opinions offered up.

“Treatments for Alzheimer’s disease? What treatments? This is the forgotten disease, literally. You hear about support for every other disease but Alzheimer’s.”  -- Red Bank, New Jersey.

“Current treatments are largely ineffective, as once someone has been diagnosed, it’s already too late for available medications to do any good. New treatments and medications should be a top priority.” -- Newtown, Connecticut

“The distinctive challenge is that the doctors are stumped. It’s basically a trial-and-error system, and they just try different drugs to see what works and what doesn’t.” -- Simi Valley, California

My Contentions

German physician, Dr. Alois Alzheimer, was the first to study this disease and have it named after his work. That was in 1905, or, 106 years ago. So here we are over 4 generations later and we still have only 5 FDA approved medications for the treatment of AD. None of the five permanently stop, prevent or cure the disease.  

Although a sense of urgency has emerged over the past 2 years with respect to AD research and clinical trials, those family members and caregivers affected by this disease are still waiting for something more to add to the AD fighting arsenal.

Early diagnosis tests that are reliable and accurate are needed now.  Medications that will effectively slow down and stop the buildup of neuron cell protein plaque are needed now. And finally, medications that will actually prevent AD from starting in the first place are needed now. The clock is ticking away  as time runs out every day for thousands of people with this disease. This includes two members of our immediate family who reside in local nursing homes because of the ravages of Alzheimer’s.

6.    Specific challenges facing diverse communities

Quotes from  the report  and community forums across the country speak loudest here.

“The pervasive misunderstanding that Alzheimer’s disease is a “normal part of aging” regrettably rings especially true in ethnic and minority populations. Many people who participated in the public input sessions described how a better understanding of the importance of language and cultural beliefs can assist older adults affected by Alzheimer’s from these diverse communities.”

“[There is an] extreme lack of knowledge, stigma and denial about the disease with everybody, but particularly in the black community!” -- Durham, North Carolina

“In my personal experience, first of all, we all need to be an advocate!....Some Latinos are afraid or don’t know what to ask.” -- Alexandria, Virginia

“Cognitive decline is accompanied by a growing dependence on others who may or may not be able to provide the care and support needed. This is even truer of immigrant families with limited skills to navigate the health system and aged spouses who may or may not themselves be well enough or savvy enough to provide the support and management.” -- Washington, D.C.

“My mom passed away from Alzheimer’s. We’re Hispanic. I don’t know if anyone knows, but when you’re bilingual, the patient usually regresses back to their native language. And that brought about a problem with placing her in a nursing home. We could not find a nursing home with Spanish-speaking staff.” -- Chicago, Illinois

7.    Specific challenges facing those with younger-onset AD

Presently, there are an estimated 200,000 people in the United States with younger-onset AD.

The disease is considered early-onset, or, younger-onset if people are under the age of 65 when their symptoms first appear.

The report had this to say with respect to younger-onset Alzheimer’s.

“Individuals with younger-onset Alzheimer’s can also have serious problems in the workplace.

The key areas affected in individuals with younger-onset Alzheimer’s included short-term verbal and visual memory, knowledge of words, or, concepts, executive function and organization, judgment and decision-making abilities, personality and motivation. Deficiencies or changes in these important areas can often affect workplace performance and professional relationships and, ultimately, will jeopardize their employment. Numerous people expressed concerns that sharing an Alzheimer’s diagnosis with an employer would result in a negative impact on employment status or access to an employer-provided health insurance plan. Many individuals with younger-onset Alzheimer’s and their caregivers believe that companies would immediately seek to terminate the affected individual.”

Public forum gatherings included these opinions.

“That diagnosis would mean an end to my career. An excuse can always be found when an employer wants to eliminate an employee.” -- Poplar Bluff, Missouri

“...There are no good programs out there that are geared toward a younger person, like a daycare program or therapy that would interest him. All of the programs are for geriatric patients.” -- Tampa, Florida

8.    Unprepared caregivers

There are nearly 15 million AD and dementia caregivers in the United States. They provide 17 billion hours of unpaid care to family members and others with a value of over $202 billion.

After receiving a diagnosis of AD, most people have embark out on their own to identify critical services they don’t even know they’ll need yet and, for many, have never had to access before. There are no standardized road maps or guidance for this process.

Town hall feedback offered the following quotes from participants.

“I have been my grandmother’s primary caregiver since the age of 15. I gave up everything to take care of my grandmother. I received no help from the government for bills, I received no information about resources. I struggled with this disease for over five years and am still struggling.” -- Corinth, Mississippi

“Both my mother and father suffered from broken hip fractures. Every step of the way, I was clued into what the next step was in their recovery. With Alzheimer’s...you are on your own. No preparation, no support group at the doctor’s, no real understanding or sympathy from the medical community except for some good souls here and there.” -- Davie, Florida

“Until a cure is found, or a way to halt the progression of Alzheimer’s, we need to find a way to help the caregivers. The caregivers are saving us billions of dollars a year by maintaining the person at home, compared to the cost of institutionalizing someone.” -- Waterloo, Iowa

My Contentions

Three things are immediately needed for caregivers. First, education, second, counseling and third, respite care for them. Oh, and a hell of lot more active involvement by other members of the family.  If an elderly couple raised 4 kids, for example, then why the hell is it that only one child is left to care for parents while the other 3 run away, hide or otherwise remain disengaged. 

Help for the one can come in the form of financial assistance for groceries, gas, rent expense, doctor visits, etc. It can also be provided via arranged respite time off for the active caregiver sibling. One day off each week, or a weekend off every two months with either the other sibling handling the care or just simply paying for a screened and qualified person to do it. 

In other words, noninvolved family members have a choice in how they can assist. Pony up with personal time, pony up with financial help, or arranged respite care for the one who has been shouldering the whole burden.

9.    Ill-equipped communities

The need for in-home health assistance is great. This translates down to personal care services for help with day-to-day activities of the AD patient. The simple stuff such as bathing, dressing, cooking and cleaning, helping them up and down from their chair, in and out of bed, etc.

Testimony from the public included these remarks.

“How do you pick up a 200-pound man? That’s how much my husband weighed. I had to put him in a home when I could no longer move him.” --Sequim, Washington

“My husband has had AD for seven years. He’s 76,  I’m 74, and I’m doing it at home by myself. The one thing I need is time to do shopping. They need a place that we can take them for a few hours; there is no place where I live. I have to take him everywhere I go, but it is getting too hard to do it. He is in the last stage.” -- Trout Run, Pennsylvania

“One of my problems is that I desperately need respite care. This is very expensive. I need to be able to have a break once a month from the day-to-day overwhelming duties.” -- Encinitas, California

“Providing round-the-clock care to someone with this disease is very challenging and the longer they have the disease, the more challenging their care becomes. Caregivers need a break from that scenario frequently. Without adequate time away, every level of care starts to break down.” -- Jonesboro, Arkansas

My Contentions

First, more respite care made available that is affordable to the general public. Some far-sighted employers are now beginning to offer a limited number of days each year of quality respite care  as part of an employees benefits package.  In my view, this benefit should be offered to employees with provisions for up to 2 full days of respite care per month for a total of 24 days per year.

Second, more transitional housing that covers the middle ground between those folks who are still able to safely maintain their independence and will not yet require placement in a skilled care facility for their daily medical and cognitive health needs.  In the greater Sacramento and Elk Grove area where my wife and I reside, there are a substantial number of new assisted living facilities being built or that have opened within the past 3 years.  A few offer “memory care” wings within their establishments but the majority do not.  Further, most are not equipped to handle or contend with moderate to severe AD residents.

Third, drive down the ratio of caregivers and nurses to residents that they must care for per each work shift.  Presently, most nursing homes maintain a ratio of 1 caregiver for each 8:10 residents. This is primarily during the day shift. For the swing and graveyard caregiver shifts, the ratio can increase up to between 1:12  and 1:15.  That is simply too many patients for one caregiver to handle and devote any meaningful time to.

One of the our nations’ premier models for cutting edge Alzheimer’s resident treatment, care and staffing ratios is the Lakeview Ranch in Darwin, Minnesota. Try a staffing ratio of 1: 3 ! ! 

More involvement, more engagement and a thorough understanding of each residents’ personal and medical history at the time they are admitted. Visit the web site of this facility at www.lakeviewranch.com/index.php  Read for yourself how this  facility and it’s maverick approach to caregiving is showing the rest of world how to care for and deal with AD residents.

For a more detailed testimonial of the Lakeview Ranch, visit Bob DeMarco’s Alzheimer’s Reading Room at www.alzheimersreadingroom.com/

10.  Mounting costs

More quotes from town hall meetings included these.

“Most insurance won’t cover just custodial care and personal care assistance, but this is what is disabling and killing the caregivers of these patients. Even long-term health care benefits cover this only partially, and most people don’t have it due to the prohibitive costs of the plans available.” -- Laguna Hills, California

“I am the sole caretaker of two parents with Alzheimer’s. My ‘job’ has been 24/7 for the last three years. I have had to give up my job, my savings are gone, and I’ve had to declare bankruptcy. My parents are living on Social Security, so that is three of us stretching a budget that is extremely small. They are $50 over Medicaid guidelines.”

“...There needs to be more publicly funded options for those who cannot afford expensive facilities or costly adult daycare centers and therefore feel trapped into caring for the Alzheimer’s  patient at home, at a cost to other family members. Unfortunately, the reverse is happening, as federal and state budgets ax funding for these programs to make up for the revenue losses in the past few years. It’s incredibly short-sighted to not understand that the people who are most hurt by the lack of public assistance are the backbone of our nation: the low income and middle-class workers who cannot sustain this level of caregiving.” -- San Diego, California

My Contention

No argument from me. Skilled care facility expense rates run the highest when it comes to meeting the level of care and staffing demands required by an Alzheimer’s patient. 

The economic strain being imposed upon us by the Alzheimer’s scourge is a formidable one. Much like a growing stellar black hole. Except that this black hole is not 1 billion light years away from us. It is emerging within our midst and is sucking the energy, the health and the nest-egg estates out of millions of citizens.  Time to irrevocably commit to a change in how we have mishandled our dealing  with AD up to now.

Quotations and commentary taken from the report, Alzheimer’s From The Front lines: Challenges A National Alzheimer’s Plan Must Address in this blog were prepared and published by the Alzheimer’s Association. 1-800-272-3900.  Their web site is www.alz.org  

To view the original 48 page report, or to download your own copy of it, go to www.alz.org/documents/napareport.pdf

Jeff Dodson

November 20th 2011