Response to 2013 Florida Purple Ribbon Task Force Report
I have reviewed the Purple Ribbon Task Force Report and the survey. I don't agree with the approach, recommendations or the data and underlying assumptions forming the basis of same. I was particularly concerned with the failure to address abusive practices, systemic industry reform, and secondary impact. After repeated review of this document, I arrived at the conclusion that proposals were no more than plugged holes in a dike with the damn about to burst.
ADRD is a global health crisis of frightening proportion. It is a vicious and insidious disease with debilitating economic, psychological and physical consequences extending far beyond the directly afflicted. This Task Force had the unprecedented privilege to not only place Florida in a national leadership role in addressing and responding to an international humanitarian medical crisis but to shine a light of hope in a very dark place for millions of elderly and their families. Your response was insular and short sighted. It will cripple this state.
First, it was my understanding that the impetus for Task Force creation was the 2011 Miami Herald investigative report series, "Neglected to Death", the focus of which was facility abuse of elderly, particularly ADRD, and state regulatory oversight. It is simply unforgivable and irresponsible that this emergent and heartbreaking crisis as to the elderly in general, and ADRD in particular, was not met with regulatory reform, expanded enforcement and financial/criminal sanctions for this conduct.
Not only was this not addressed but, amazingly, a statement was made that placement of small groups of ADRD elderly in homes was the best solution. I have serious concerns over the justification for this conclusory remark as to ADRD and the source's understanding of disease impact. These homes are not subject to regulatory oversight and are thus a prime target for incompetent coverage and abusive practices. (I thought it was illegal for professionals to recommend unlicensed facilities.) ADRD are not able to articulate their needs, complain, or ask for help under the best circumstances. Removing a layer of government protection, however remote, is ill advised and careless. Even in a facility, this concept of small groups, dating back to the early 90's, struggles because success was predicated on an interdisciplinary team approach which does not exist.
Second, public policy and elder service delivery has fallen prey to an out of control, self serving, self perpetuating and self aggrandizing provider controlled industry dedicated to achieving maximum profit with minimal overhead. Often owners and investors are outside the state or international. Profiteers want a piece of the elderly and layer by layer, they take it. Owners can run a 30% profit level on a facility or HHC business. The best way to evaluate this, outside SEC, IPO or tax filing, is to look at listings or private offering representations of gross revenues and owner benefit. After a few are open, whether or not an IPO is filed or ownership transfers, investors do expect continuation of the same return. Bare minimum revenues are directed toward elder services. The State does not benefit.
Truly outstanding health care professionals, including RN's, LPN's and CNA's suffer and eventually abandon direct service delivery because they cannot control the desired quality of their efforts. Caretakers suffer because they cannot insure that the safety, medical needs and quality of life of their loved one will be served and personally take on the burden. Elderly suffer because they are personally, physically and financially abused and victimized.
The Alzheimer's Association Campaign for Quality Residential Care: Dementia Care Practices Recommendations for Assisted Living Residences and Nursing Homes is a valuable reference. It conditions successful implementation of recommendations on having a sufficient number of appropriately trained staff. This is not evident in practice, was not translated to statutory or regulatory obligation by the Task Force and should be immediately addressed before additional elderly are harmed.
Many families could have paid the $120,000 annual fee for SNF care and continued with their lives. Most don't make that election because the ADRD were repeatedly injured when attempts were made, that avenue was closed to ADRD by the provider, or only made available with doping and/or a 24/7 aide. ALF's are simply out of the question because, in most cases, they can't meet the base medical needs and life quality for non ADRD elderly. ADRD shares the same expected medical and ADL needs normally attendant to aging and many cognitive challenges are based on failure to responsibly meet these needs.
Florida AHCA and CMS deficiency reports and judicial filings, in the public domain and available for your review, reflect across the board abuses. Facilities are not safe and engage in abusive practices directly or by quality understaffing and neglect.
Third, the "aging in place" policy statement, particularly as to mid to upper level ADRD or sundowners is simply cruel and dysfunctional. It will economically destroy this State, families, and future generations because it not only fails to take into account the needs of the ADRD but fails to assess and quantify the secondary destructive personal and financial impact on families. As to the majority of elderly who live alone, it is life threatening. Norway parrots this approach in its 2015 report but, in the absence there of admission to SNF's without acute condition, has their own issues with death and injury by release of isolated non ADRD elderly to a home environment. I don't understand the policy advocate's underlying motivation. Is it an HHC profit oriented response, a mathematically challenged but otherwise well meaning individual, or someone who desperately needs a reality check as to disease manifestation at the mid to upper levels?
I don't know your proposal for single ADRD, particularly those homeless without financial resources, when SNF Medicaid beds are scarce and selectively reserved for non ADRD. I do know that elderly spouses can't handle ADRD. They have their own needs and are often continuously and irrationally verbally and physically abused. It is just too much. Most look to divorce to avoid ADRD caretaking, simply leave or predecease the ADRD. At some point, children, if there are any and if they care, have to gratuitously assume this full time obligation.
In December 2012, the New York Times, after a comparative international review of efforts in this area concluded
"Is care at home for patients with Alzheimer's necessarily more humane? Only if caregivers have the resources -- financial, physical and emotional -- to handle this draining, exhausting, immeasurably difficult job. And only if the institutions that serve people with more advanced forms of Alzheimer's disease and other types of dementia are so poorly financed, staffed and operated that we wouldn't feel comfortable leaving loved ones in their care....
Anyone who's followed reader response to J. Brody's column this week on aging in place knows the burden that this can place on families, especially if government support for home-based services (companions or home health aides who help with bathing, dressing, toileting and other tasks), adult day care or respite care is scarce or nonexistent, as is the case for most middle-class families in the United States. ...
Other countries with which the United States is closely aligned have embraced long-term care as an essential social responsibility while we have not. Unless and until we do so, caregivers here will be among the most harried, stressed and burdened among wealthy, developed countries in the world."
Children caretakers are former attorneys, architects, doctors, engineers, technology and security consultants, teachers, industry executives, police, prosecutors, university professors, fire, health care professionals etc. No profession is excluded. The reason why we are "former" is because, in the absence of essential industry facility reform, regulation and enforcement, there is no responsible choice.
These caretakers are comprised of both sexes, cross party lines, and are frustrated, not simply because control over their own economic, professional and personal future has been taken out of their hands by small time industry profiteers, but with the fact that the quality of the lives of their ADRD loved ones could have been immeasurably improved if safe, quality facilities existed.
Our economic loss and that of our families is Florida's current loss and future burden. Caretakers, professionally and financially, were critical contributors to Florida's economy. We bought and provided goods and services. We contributed to the community. We saved money for our children's education and our future through 401K's. We preserved our health. Now, as caretakers, we do not engage in any of these efforts.
A new classification of poverty has been created which is "intergenerationally" contagious to join the current ADRD unserved homeless population. Put another way, at the end of the caretaking period, which can exceed a decade, our resources have been depleted, we might have MCI, ADRD or a physically debilitating condition, we don't qualify for SS disability or unemployment since we have not contributed, and there may not be family to provide care. 50% of the future generation will be ADRD caretaking. Grandchildren want to know whether to invest in their future if everything is going to fall apart. How do we respond based on your plan?
ADC does not help the ADRD if continuous doping is used to protect other participants from sporadic bouts of agitation occasioned by infection or alienation of environment. ADC does not help if the home caretaker works and the disease manifests itself at night by sundowning, whether or not the ADRD is otherwise normal to easily manageable during the day and particularly considering the lives of children and their schooling. Segregating all ADRD to one ADC but intermingling levels is traumatic for the lower levels that retain some sense of self, daily facing their possible future particularly if operations are not individually medical and cognitive need responsive. ADC is one entity depending on staffing which might not realize the profit level of facilities, if any, depending on quality of service.
With HHC, demand exceeds quality supply for elderly in general. The usual bare minimum wage does not otherwise attract quality applicants particularly if a non ADRD position opens. Occasionally, through internal networking, as opposed to HHC agencies, a miracle occurs but it is usually short lived. Unqualified HHC pose a danger to the patient. Again, this is a complex disease. It varies in form and manifestation and can change without notice. It requires an interdisciplinary team effort focused on the ADRD.
Last survey, 25% of ADRD caretakers repeatedly engaged in suicide ideation. 10% engaged in it after the protracted caretaking period was over. Individuals personally advised of this diagnosis contemplate suicide because they don't want it for themselves or the burden they have already experienced for their children. Absent reform, this will continue.
We want the lives of our ADRD loved ones immeasurably improved in a properly staffed safe and secure environment conducive to their special needs and enriched with advanced cognitive or sensory stimulation like a Snoezalen room, interactive games and activities, supported by responsible, dedicated, trained and educated interdisciplinary professionals who care that ADRD and their medical needs are attended to without chemical or physical restraints and promote level appropriate company of friends. We want them to enjoy their life as it reaches its conclusion, to be protected from abuse in all its forms, and to have a choice in the manner in which quality care is provided.
Reports like this have repeatedly issued over the past 15 years. They are always well written, there is always a survey eliciting information which has been in the public domain for so long, judicial notice would be taken of the conclusions without need for evidentiary support. They define the disease, introduce impact and demographic review analysis and recommend research, education, awareness campaigns of whatever kind, some legislative public pronouncement of caring, and reinforce support for research to find a cure through another commission or office. Occasionally ADRD are thrown a bone through subsidy of providers whose conduct is the basis for complaint. Operational regulatory reform is never addressed because tasks forces are controlled by the entities which should be regulated. Scientists never receive sufficient direct funding. Elderly ADRD never receive the services they need because critical issues are never addressed. One frustrated attorney caretaker made a remark that such reports all be filed away under the category "don't ever do this again".
The following provides limited comment on your report, including your needs analysis, rejects historically structured commissions and task forces, introduces issues not covered but with the focus on necessary reform, and presents recommendations and comments assimilated over the years from caretakers, attorneys and health care professionals including doctors, RN's, and CNA's with prior industry affiliation. The goal is to accomplish reform and proceed in a new direction without state financial stress.
There is a two part solution.
First, clean up existing operations though regulatory reform outlined below more specifically, particularly focusing on increasing staffing and quality control, and take out the trash. Set up sufficiently harsh fines and sanctions individually and by facility to insure that abuses will not continue and to support enforcement in cases of repeat violations.
Second, set up a revolving account for seed monies and loan guarantees, including interest subsidies for infrastructure/development, consolidate IDG and other state and federal resources to support nonprofit operation of multilayer extensive campus developments, sufficiently attractive to entice those amply able to pay for residency, including high level medical care, cognitive services and activities to improve quality of life. Attach it to a university for memory disorder service (like John Hopkins Copper Ridge) independent medical oversight and student involvement. By eliminating owner benefit, the 30% differential may also be applied to cover those unable to pay but in need of services. The goal is a physically and financially self sustaining campus, where no one is turned away.
In other word, change the conception of aging from a depressing environment to one where spouses without ADRD can live and regularly visit their loved ones happy in the knowledge that their needs are addressed in a positive way while they pursue their own interests. Change the attitude of staff towards their role, change the name to a university concept with individual neighborhoods/dormitories, and make it an interactive campus and a wonderful place to be. Instead of being the country that can't get it together in terms of aging and ADRD, let the United States be a leader.
ADRD Population and Needs Assessment
Data challenges based on elevation of presentation form over substance consist of the following:
First, in order to presumably substantiate policy recommendations, the Task Force had a survey. The survey structure was borrowed from, I believe, Oregon, despite the wealth of talent in this state and the issue intimacy of highly educated resident professionals. The survey was not publicized and was open for a period of about two weeks on a site not regularly visited. As to ADRD and family caregivers, the response was so insignificant that no responsible economist would have publicized the survey results much less used it as a basis for defining issues because it lacks statistical integrity. It otherwise substantively failed because the primary focus was asking questions which supported a provider private pay response, not otherwise responsive to ADRD needs.
Second, there is a concern that the base from which linear projections have been made as to the number of ADRD in Florida is not valid and existing and future service delivery needs estimation will suffer. The Rush CHAP's report has routinely been used nationally. The base for this report was an older population on the south side of Chicago and early onset, to the best of my recollection, was not taken into consideration. Over time, studies have repeatedly made extrapolations applied to census, disease incident reports and other variables using this baseline. I would suggest that this may not result in statistically significant results as to, at least, Florida and California.
Third, I also question whether projections should be linear. These numbers do not take into consideration the possible contagion factor by example but not limitation, prion scabie migration, infection and replication (if a causation) not prevented through traditional surgical sterilization methods, the impact of surgical inhalational analgesics as a contributing factor in neurotoxicity/dementia, and the rising incidence of vascular dementia, all of which would suggest an exponential as opposed to linear projection approach.
Fourth, ADRD is a primarily a hidden population. Death certificates rarely report ADRD as a cause of death because other health factors intervene before the afflicted reaches the terminal stages of the disease. Inferring from presentation of county cause of death statistics that ADRD may be quantified in this manner is improper.
Establishing a form of reporting of this disease to more closely define the scope of the problem, particularly in a state which bears a substantially disproportionate share of the ADRD population might be helpful. I don't understand why Florida has an issue with doing, on first impression, a more statistically significant analysis and quantification. Inquiry through residential property tax billing with pass through to non owner occupants was suggested as one way, without incurring significant cost and more closely reflective of county/local needs, to solicit this information. As a secondary benefit, it would also be a way to publicize the brain bank, obtain dedication and encourage, at the early ADRD stages, assembly of diagnostic and cognitive history to accompany donations in furtherance of research.
Alzheimer's Disease Advisory Committee
There is a critical and urgent need for provider industry reform, particularly staffing of facilities, as to the elderly in general and a complete reorientation and restructuring of approach as to ADRD. The Task Force declined to address reform. The responsibility for the future of ADRD was left to the industry dominated Alzheimer Disease Advisory Committee.
The constituency, if you will, is the elderly, particularly the 30% or more ADRD elderly and growing proportion of early onset afflicted with ADRD. Yet repeatedly over time, attention is directed, not to the needs of this population, but to the interests of service providers.
When you have a regulatory structure controlled by the regulated through Committee participation or otherwise, evidenced by policy encouraging direct provider benefit through subsidy or oversight avoidance, you have a form of indirect and constitutionally prohibited entrenched special interests influence. It is a little like stepping in quicksand. Once you have lost your way, you are pulled deeper and deeper into the quagmire of minutia driven situational response from which it is impossible to extricate yourself no matter how well meaning your efforts. Your Baker Act justification and analysis is a good example. Proposed respite care funding is another. Underlying all of this is the complete destruction of all hope of responsible choice to caretakers and quality of care for the ADRD as a matter of Florida public policy.
The Committee contains representatives of the assisted living, home health care, hospital and pharmacy industries. They should be removed and replaced by individuals who do not have financial ties by investment, ownership or employment with a provider. Preferential composition, given the enormity of issues, should be given to a retired judge, Florida Agency for Health Care Administration, an economist, attorneys, prosecutors, nurses associations and legislative representatives who are all able to ask the essential questions and perform investigations without challenge to neutrality.
This is not a personal or professional criticism of any of the individuals involved. I don't know them. It is simply that, as a matter of public policy, no industry should be in a position to control, influence or otherwise make policy which regulates its conduct or in which it might directly or indirectly receive a financial benefit. It is a conflict of interest. Industry input is important but not in this way.
You should seek an opinion from the State Attorney General's office on this matter. At minimum, participation creates an appearance of impropriety which could directly or by inference undermine the integrity of efforts.
Department of Elder Affairs.
I was legislative liaison for a State Department many years ago for Aging, Housing, Local Government, MFA, HFA etc.. Back them we had floor privileges in both houses so information exchange was ongoing. No bipartisan disputes attached to any elder issues. During that time, the legislature passed protective measures like the uniform construction code, planned real estate development full disclosure, nursing home patient's rights and a full range of elder services directly or through state matching funds for federal programs with bipartisan support.
When money did not exist for requests that were truly beyond any realistic appropriation expectation, we found a source. For example, when we wanted to fund pharmaceutical assistance for the elderly on the state level, we attached it to the gaming referendum for revenue dedication. When we needed a design/materials/best practices for affordable housing, we did not pay someone to do it, we went to a television network and announced a contest.
As to the Department of the Elderly, I noticed you contracted with an entity to provide design or whatever development plans for a LTC. I did not see the specifications you put out for bidding on this so I can't comment. Facility design and building specs information are easily internet available. I believe the University of Florida already built one of the original Smart Houses and green facility construction is a fact of life as are sustainable communities internationally. (Germany apparently has an entire town self sustaining.)
You might consider publicity, through contests, as a major motivating factor for free design concepts without financially obligating the State. You receive more truly exciting and innovative solutions en masse and if you integrate it with interdisciplinary considerations from technology, security, surveillance, assistive devices, to artificial intelligence and sensory input, entertainment, activities and acute care advanced equipment, with building considerations, you might get past an extended stay design with a pacing circle. Finally, design concepts which integrate isolated small groups are physically and personally dangerous to the welfare of residents unless and until adequate quality staffing with oversight is mandated and aggressively enforced.
Recommended Industry Reform
The purpose of these recommendations following is to make facility owners start taking issues concerning elderly seriously because the State of Florida finally does. If it takes sanctions, penalties and other costs as well as license disciplinary/revocation as to staff and owner/facility, so be it. The conduct is wrongful and someone should start caring before injurious results are out of control. Further if conduct would have been criminal outside the walls of a facility, including accessory before and after the fact in cover up, it is time to recognize it for what it is.
Years ago, I was Director of Licensing engaged in casino development at a time when State regulation over construction, all casino and hotel operations and employees was intense. When a facility or operations are heavily scrutinized and fined for misadventure, a higher level of conduct emerges.
The following, from professionals in the field, is exemplary but certainly not exclusive. It does not but should address hospital failure to have in house coverage of ADRD fall risks or wanderers. Caretakers, particularly the sandwich generation who work or have dual elderly/family responsibility and are without funds, cannot sit for 24/7 with a hospitalized ADRD. Some hospitals let an aide do coverage for a group of 2-4. This is extremely helpful and reduces hospital liability risk.
Ownership and Management
Prequalify, through a 4 way investigation and license owners, investors and management. Educational, experiential and training prerequisites are currently insufficient and should be strengthened. (in Florida you only need high school to operate an ALF) There is precedent for this in NJ's gaming industry and other sensitive fields. We need to start treating the needs of our elderly as critically.
Identify the nature, function and specializations of interdisciplinary staff dealing with ADRD. Increase minimum per patient staffing ratio per shift with specification of their qualifications for dealing with cognitive challenged particularly at night. Background investigations, qualifications and training of staff need to be expanded and reassessed.
Economic Fines and Sanctions
Continuously inspect and severely economically sanction those substandard facilities which harm the elderly.
Staff and Owner Liability for Violations
Take action to discipline or revoke the licenses of operators and staff that participated in or were aware of violations or falsified records and failed to report same.
Facility Compliance Repeat Violations
Federal or state trustee supervised independent contractor assumption of operational activity over extensive or repeat offenders should be provided to bring a facility into compliance with the cost of same borne by the owner/operator. Sanctions should be automatic and not negotiable.
Assault, battery, criminal negligence and endangerment, pain medication theft and financial abuse should be treated through the prosecutor, not the ombudsman, in the same way it would be treated if outside the facility. Staff who participated in or were aware of the offensive conduct and failed to report same should be similarly charged. Inception of any such investigation and criminal proceeding or license sanction or revocation hearing, should be communicated to all concerned federal and state authorities.
ALF and ADRD Care
ALF classification of care, as it currently exists, should be eliminated as a vehicle for ADRD care. It does not even meet the basic needs of elderly without ADRD and this should be addressed.
There is a need for explicit verifiable protocol for the prescription and administration of medication for ADRD as to nature, duration and dosage, documentation of use of off-label drugs and physician (not nurse) justification for exceeding any recommended dosage or duration of administration after seeing the patient. There should not be an automatic presumption of physician competence in this area. (One psychiatrist had no knowledge of Lewy body dementia.) When elderly are ignored or have ADRD or are otherwise doped with off label drugs for behavioral control purposes, they cannot articulate pain. It is a form of involuntary imprisonment not unlike the Argentinean prisons in the 50's which used a rudimentary form of psychotropic drugs on inmates. (In Florida, drugs are also being used on juvenile detainees to control behavior.) If elderly ADRD are doped when they act out and they act out because they have untreated cancer or undiagnosed medical condition which they are unable to communicate, they face years of pain in a semi comatose condition before their life ends strapped in a wheelchair or urine soaked bed without relief. There is an urgent need for immediate action. This conduct is criminal and should be treated as such.
Cognitive/sensory activities for ADRD.
Identification of advanced cognitive conditions which mandate immediate facility release and transfer to a specialized facility dealing with memory care or to a SNF, if attendant medical issues, should be automatic to preclude doping. Facilities should have structured interventions and activities for ADRD which respond to their unique needs.
Prior court approval (after family and beneficiary notice) of any gift, behest, testamentary or other property transfer to a facility or any of its employees should be mandatory.
Provision of distance web cams to permit HCS and staff monitoring of their charges, particularly in the case of ADRD should be provided. There is ample evidence to suggest that when staff are under surveillance, abuse abates. Similarly female patients in understaffed facilities need to be protected against sexually aggressively ADRD men. The use of minimum wage employees in egregiously understaffed facilities particularly at night is not acceptable.
Fall Risk and Wandering Prevention/Notice to HCS
Remote notice of bed vacation through sensor monitoring technologies to staff to prevent fall risks and ADRD wandering at night prior to injury is critical. Absence of such protection resulting in death or serious injury has been the basis for substantial litigation. There further needs to be mandatory immediate notification to HCS of injury to patient and accurate record preservation of same.
State of the art lifting devices/equipment
Staff and patients have been injured by lifting challenges. Staff has a brutal experience lifting physically challenged/obese with long term chronic consequences. Patients are injured if mishandling occurs. This needs to be remedied.
HCS's should be able to directly access the patient's records, including medication management and nurses notes through online interactive software between HCS's and facility. No medication or medical treatment should take place without an HCS's consent. Interactions between medications or other medical conditions and side effects should be self contained within this data base, continuously monitored and addressed. There is no need for handwritten files which can be manipulated/altered pre inspection.
There needs to be strict guidelines as to the use of the ombudsman function, the obligation of the ombudsman to immediately refer elder endangerment or possible financial abuse to the appropriate authorities and to advise HCS, POA and family of their options, including referral to prosecutor, counsel and a NAELA contact number, or availability of court mediation services as recommended herein. The ombudsman role should be carefully redefined and restricted in scope to matters not possibly criminal in nature. (Some issues are just not appropriate for the ombudsman.)
Facility License Manipulation
There should be an absolute prohibition of facility license downgrading to avoid continuing state scrutiny and oversight when the facility is faced with closure at the higher level.
Intergenerational Support and Information Access
The "intergenerational" approach suggested would make a nice Hallmark card but you have to deal with reality. It is not going to happen and with ADRD there is an issue as to whether, as to children, it should. There is a reason the ADRD caretaker community has the saying "There is always one" (who takes on the responsibility). Another way of putting it is "There is only one".
Many of us started caretaking in the 90's when we were in our 40's and continued through our late 50's. There is no way to accurately convey the absolute shock of initial ADRD diagnosis and the immediate and complete upheaval and destruction of finances, health, and professional and personal life. The unrelenting stress of the behavioral challenges of this horror of a disease, ongoing sleep deprivation occasioned by sundowning and the sporadic and unpredictable agitation/violence which can result in actual physical injury to the caretaker are not the only challenges. The caretaker must deal with non ADRD medical conditions attendant to the aging process.
In order to understand this, you have to get past the marketed mental picture of a sweet grandmother, mildly confused, smiling at a helpful grandchild. This is a fabrication along with an intact family unit working together when ADRD reaches the upper stages.
The ADRD are agitated, offensive, argumentative and occasionally violent with errant behavior predicated on infection, pain, boredom, frustration and fear. They will pace incessantly, wake you in the middle of the night pulling hair because they want to "go home" or because they think you stole the (deceased) spouse or (deceased) mother. They will get up repeatedly in the middle of the night to get dressed for school, stand by a window or door to protect the family all night and punch anyone who comes close. Alternatively, they just wander out the door. They bite, scratch, hit, and accuse anyone of stealing whatever is on their mind at the time. Then they might stop for a few weeks and just when you think things are good and you attempt to drop them off at ADC so you can get to work, they refuse to move. If you take them out, they can refuse to get out of the car for hours on end when they return since they don't recognize where they are. If they are a fall risk, the problem is worse since you have to follow them to protect them. They might go through a fear of water period for weeks or months. They will take things and hide them or take off their clothes in public. Men, usually, may act in a sexually aggressive way toward children or grandchildren because he thinks they are his wife. The challenges are endless. Children might want to help but the ADRD might not like them. Elderly might be able to handle the ADRD during the day but experience unbearable night challenges. (Perhaps there should be Adult Night Care.)
Whoever they were that you loved, as a spouse or a parent, only exists in decreasingly rare glimpses and disease ramifications have made them unknowable. Maybe they occasionally know you and maybe they just know your name. This can continue for 10-15 years.
Children can't and should not be exposed to this unnecessarily because they are not sufficiently mature to handle it. No one really is. Even adults struggle with being accused of something they never did or being hit when violence was never a part of their life. Why should children have to deal with it when the ADRD might not like having them around? Each case is different but the presented characteristics are common.
Family problems range from lack of cooperation to money and estate issues. I will address this in the section on mediation. However, the recommended approach is through professional ongoing interdisciplinary interaction where intergenerational support is gratuitous or not necessarily family related.
Caretakers are daily exposed to the ravages of this disease and are highly motivated. If a USF professor discovers that when the stress related protein FKBP51 partners with protein Hsp90 it contributes to tau toxicity, we want to find out more. If a student grandchild sees the disease progress, preferably infrequently, research becomes more interesting and an interest in biogenetics, psychiatry or neuroscience might emerge. In those cases, you will start to see intergenerational support in ways you never contemplated.
Research grants issue to the scientific community. (Caretakers become very annoyed when scientific research monies are redirected for any reason particularly industry self training.) Subsidized research finds its way into professional journals inaccessible to the general public except though subscription, per article payment or university affiliation. Accumulated costs to review research for interested caretakers and students coupled with the cost of distance viewing of conference presentations is collectively exorbitant, effectively denying the intended beneficiaries access. I believe the cost of the 2013 pharmaceutical industry report on international advances on Alzheimer's drugs is $1600. Yet they want us to participate in their trials. Journals cost about $37 an article. The Alzheimer's Organization charged $500+ to caretakers for internet viewing of conference proceedings though they exist by virtue of our ADRD.
This somewhat circuitous and incestuous proprietary orientation creates an informational glass ceiling caretakers and students can't afford to break through. Information actually conveyed is usually abstract in content although there are exceptions. NIH did permit free web cam access to the 2012 Alzheimer's Disease Research Summit. Some universities, like University of Miami, permit distance access, without charge, to cognitive training at a level sufficiently advanced to be of interest.
The State Library System could be engaged in concert with state universities to assist access. Alzheimer's national and international interdisciplinary publications on all matters from the scientific (journals on molecular biology, neuroscience, and biogenetics) to new forms of cognitive interventions are of interest along with conferences and lectures. Caretakers and students can get to the local library or access through Kindle etc.
Many caretakers are certified in their profession and/or have one or more doctorates. As to students, I believe it was a 15 year old that discovered an inexpensive strip test for a type of cancer a few years ago. One scientist who was participating in the UW "foldit" program of protein structure modeling, (available online to anyone desirous of participation in research) said that his high school son was much more proficient than he was. If you want student interest in this field and you want to help caretakers help their ADRD, respect their level of intelligence and open the door.
A World Autism Center in Jerusalem is underway through the support of the International Center for Autism Research and Education, which is based in New York City. It plans to include a state of the art research facility, a "global platform" for field researchers, continuing education programs and "university level" courses on the condition. It will also have a residency program and will otherwise include advances in autism research including early detection. In other words, it plans to be the world's "largest multidisciplinary center for autism research, diagnosis, treatment and prevention."
I proposed a similar structure for an international Alzheimer's Center, under the umbrella of the 78 nation Alzheimer Federation and in affiliation with the WHO, providing technologically advanced facilities for scientist and independent NGO research, as well as consolidation and development of available international resources and technology addressing cognitive challenges. This would be an interesting project if Florida wanted to take on the challenge (and it could also incorporate facility design elements).
Court Mediation Services, Caretaker Responsibility and Compensation
In recognition of the statistically significant percentage of the future generation who will be full time caretakers of ADRD parents, disputes as to responsibility and compensation for care whether during the life of the ADRD patient or as to unjust estate enrichment for uncompensated services provided as a post DOD claim thereafter, will impose an overwhelming burden on the courts.
There is an immediate need for the state courts to make available, publicize and encourage pre filing court mediation of any and all family/beneficiary disputes relating to care, including caretaker compensation, whether continuing during the term of the caretaking or post DOD in estate distribution, immediately on diagnosis or indication of need, and reducing same to written agreement. In the absence of such agreement and to the extent this becomes an estate issue, mediation should immediately follow the assertion of an unjust enrichment claim by the caretaker.
Most family disputes are based on allocation of caretaking responsibilities and compensation. Family members may refuse to participate except when their financial interests are concerned at which time they become highly active. Caretakers struggle to find time to sleep much less take on a court battle for compensation particularly when liquidity is limited, they have already lost their income and the only asset is the home.
Absent agreement or early court intervention, an unjust enrichment claim may be asserted against the estate post DOD. Historically these were difficult because there was a presumption that family caretaking should be gratuitous. However, recently and thanks to the Alzheimer's Organization, the nature of ADRD and the demanding nature of the care is receiving international public attention. Courts are now recognizing this claim in ADRD cases and some states have passed laws specifically providing for caretaker compensation.
Provision for special needs or other trusts may not be available or have been addressed in many of these cases. This goes further. Caretaking is sufficiently traumatic without family dissension. Early, expeditious and affordable recourse is essential. Mediation provides it.
This is particularly critical since caretakers of Alzheimer's patients, who collectively save the government billions of dollars are (1) denied Social Security disability benefits, no matter medical conditions which would otherwise justify entitlement or prior contributions to Social Security, usually spanning decades, because of the time restricted credits contribution prerequisite to qualification, (2) further penalized by reduction in future social security benefits by inability to contribute during the protracted caretaking period which consumes what would have been the most economically significant period of their lives, and (3) denied unemployment benefits.
Often, caretakers do not receive compensation (or later assert unjust enrichment claims against the estate) because of (1) insufficient resources, (2) family dissension, (3) exhaustion, and/or (4) a general feeling of obligation toward the afflicted parent or spouse which would make taking compensation for caring personally offensive. They are usually unaware of the loss of Social Security disability benefits for failure to contribute during the caretaking period, have no idea of the potential for their physical harm and immune system collapse from the disease or are unable to do anything about it. They can lose income, savings, assets, and children's college funds during a caretaking period which can continue for ten years or more.
At best, if a personal caretaker, at the end, they are old, they have lost their professional marketability, they don't have the physical strength or emotional stamina to pick up their lives and they are usually medically in trouble. The experience is not unlike PTSD and the caretaker has become the patient without a caretaker. At that point, caretakers are advised that, not only is the enrichment of SS by their efforts not acknowledged, but they are penalized by SSA for the caretaking period in the denial of essential benefits and are denied unemployment benefits. This injustice needs to be addressed and rectified.
Solicitation Practices and Non Profits
In June and July 2013, Tampa Bay Tribune issued an expose' of charitable industry abuse, misuse and outright fraud in solicitation practices. "America's Worst Charities" is the result of collaboration with the California Center for Investigative Reporting, the nation's largest and longest serving nonprofit newsroom dedicated to watchdog journalism. CNN joined the partnership in March. Reports indicate that even the best charities may have a solicitation/public relations cost of up to 40%. After that, take away the balance for infrastructure support which may still not be sufficient if labor intensive services are involved. How much makes its way down the pike to the victims? It is just an overwhelming struggle particularly in today's economy when governments are facing their own crisis. http://www.tampabay.com/topics/specials/worst-charities.page
There are too many low rent operators in Florida, operating out of post office drop boxes and, through internet and other solicitation practices, holding themselves out as ADRD research or educational ventures without qualifications or staff. The underlying motivation is to non profit salary themselves by redirecting funds which should have gone to dedicated university and brain institute research scientists. In furtherance of the public trust which motivated the donation, it is time to take a closer look at the ventures legally permissible in this state and weed out the scams.
Thank you for your time.