Hello and thank you again for the opportunity to speak to you again about my lived experience with Younger Onset Alzheimer’s. Today, I have some disturbing news to report but feel the more that are made aware, the more likely action will be taken to stop a disturbing practice of physically restraining the elderly and people living with dementia including by family caregivers. As a point of reference the World Health Organization has published a brief stipulating the importance of “…ensuring that those responsible for protecting the human rights of people living with dementia should be held accountable for any human rights violations. In addition, there should be increased education about dementia to change attitudes of society and reduce stigma. Lastly, people living with dementia should be empowered to participate in decision making processes and to maintain their legal capacity…”
Unfortunately, Amazon in the US, Canada and UK is advertising a variety of physical restraints with titles and descriptions of being for “the elderly” or persons with “dementia” or “senile dementia”. See below screen captures with photos of the restraint devices. While it is not illegal to sell restraints, it is in violation of our human rights as people living with dementia to be restrained merely because we have a diagnosis of dementia. I hope each of you are as sickened as I am when viewing these ads by Amazon and will take every action in your power to change this. To date, Amazon UK has promised to cease with these ads but have failed to do so and Amazon U.S. and Canada has been silent. Amazon knowingly and egregiously perpetuates the stigma based practice of physically restraining persons merely because of age of dementia diagnosis in direct violation of our human rights. Having these kinds of ads on a popular shopping site like Amazon not only perpetuates the stigmas but creates an environment where family and other non-professional caregivers may believe this is an appropriate way to treat us.
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July 6, 2019 and again on July 20, 2019 -- Reported incorrect product information on multiple ads directly to Amazon with no response received to date.
Violation of human rights as “elderly” or “senile dementia” dx does not warrant restraint, per World Health Organization this is a violation of human rights.
Two minutes may not seem very long for most but for me they must be worth a lifetime. As many of you know, my mom has had this wretched illness for many years. Projected by all of her doctors and specialists to live at the very most one year from the point of diagnosis--she’s lived more than twenty and is still here as you can see today. If anyone should be called a survivor it should be her, myself and my family. Having endured and overcome struggles, challenges and obstacles that most people will be fortunate enough to never have to go through in their lifetimes, we know the unimaginable suffering that comes with this brutal disease. We also know that to survive it you must think outside of the box. As you may know, I have been advocating for change in the Alzheimer’s world for many years. The compound that I truly believe can be a game changer in the trajectory of this illness, after many years of trying has finally made it to phase one human trials as of February this year. Although I have to be patient as data is collected and things progress, I am confident that J147 is going to do extremely well and not only will have the ability to help treat the illness throughout various stages-I also believe it will have preventative capabilities if taken early enough. I do not proclaim to be a researcher or a medical professional. What I do proclaim to be is a daughter-a daughter who’s life and family was destroyed when we were given my beloved mother’s diagnosis so many years ago. Desperate, alone and afraid I did the only thing that I could do and that was to fight back. I fought to reach my mom-to get into her world-the world that this brutal disease had pulled her into and pull her back for myself, my father and my family. So here we are in the present and my mom will be turning 74 years old in September. Where do mom and I go from here? Some people say if J147 makes it-it won’t help your mother-it’s too late. My response to them is how do you know? And so now as we embark on what may be our final journey in our story, Mom and I have one imperative message for everyone: Acceleration-5 to 10 years for a new and better compound like J147 to come to accessibility is an unacceptable amount of time while millions of Americans and their families across the nation are suffering. If J147 proves that it can do what I feel in my gut it can do, I ask that you join me in making sure that J147 comes to fruition Fast so that millions can be helped and the future trajectory of this illness, where before held only despair will now hold true hope in my mother’s honor and for all those who have been forever affected. I will close my comment with this: Mom I thank God every day for the time we have together and no matter what happens I love you so much more than words can describe. Thank you.
At that time, at the council’s discretion, I respectfully request a brief moment for anyone present that would like to ask questions of me regarding mom and the proactive path we chose for her. My answers would of course be polite, kind and informative.
The following information appears to have significant implication to fight for conquering the Dementia plague. I thought it will be of interest since it has the promise of being a breakthrough.
Hopefully, it will motivate action from the dementia research sphere for generating the experimental data and providing the necessary study proof. It bound to prompt a wide implementation of the simple procedure outlined bellow, and hence, it has a potential to prevent the onset of dementia altogether.
If you are in a position to make the difference, in some way, I urge you to take action and be part of the solution to render dementia history.
Reduced blood flow in the brain is known to result in elevated brain temperature (see, for example, the pasted references below).
Reduced blood flow is in all likelihood fairly common in the elderly, and in some cases even possibly in younger adults. It would, therefore, cause an increase of the brain temperature and is liable to result in damage to brain-cells. This could be in particular true where the condition becomes chronic and lingers on silently for years without being directly detected; way before any symptoms of dementia manifest themselves.
It follows that a routine monitoring of blood-flow to the brain, similar to how blood-pressure is routinely tested, would allow a timely clinical/pharmacological intervention to take place and correct the condition. It's likely to alleviate the onset of dementia in all of its forms.
The process of monitoring brain-blood-flow can readily be accomplished nowadays. Although, being even less invasive, it's somewhat more cumbersome of that of blood-pressure measurement. However, ultimately it bound to be just as simple as, say, taking temperature with an electronic-thermometer (and not more costly at that).
Aristotle, allegedly, stated that: "the role of the blood in the brain is to COOL the brain". Ironically, he may have been right for a change.
At least this time.
CCSVI, Brain Cooling and Blood Flow
Posted on September 3, 2010 by uprightdoctor
"The upper cervical spine plays an important role in the venous drainage system of the brain, brain blood flow and brain COOLING...
...decreased blood flow and DECREASED COOLING capacity of the brain."
(emph. added j.t.)
Cerebral Cooling During Increased Cerebral Blood Flow in the Monkey
ArticleinProceedings of The Society for Experimental Biology and Medicine 124(2):555-7 · March 1967with1 Read
DOI: 10.3181/00379727-124-31788 · Source: PubMed
"...Intracerebral temperature gradients are basically dependent upon the rate of REMOVAL of heat from the brain by the arterial blood."
(emph. added j.t.)
Comparison of brain temperature to core temperature J Neurosci Nurs. 2004 Feb;36(1):23-31.
"...acute neurological injury...
...All 15 studies found that brain temperature was HIGHER than all measures of core temperature with mean differences of 0.39 to 2.5 degrees C reported."
(emph. added j.t.)
The following references were, subsequently, brought to my attention:
Late-Onset Dementia: Structural Brain Damage and Total CerebralBlood Flow
By: Aart Spilt, MD et al.
RadiologyVolume 236, Issue 3Sep 1 2005
"... blood flow in the brain was 742 milliliters per minute among the healthy, young adults ...
... among the dementia group was 443 milliliters per minute ...
... In patients with dementia, cerebral blood flow was 108 mL/min lower than that in subjects of the same age with optimal cognitive function ..."
Cerebral Blood Flow in ... Nondemented Elderly Subjects with Subjective Cognitive Impairment
By: Niwa F, et al.
Intern Med. 2016;55(24):3571-3578. Epub 2016 Dec 15.
"cerebral blood flow ... is useful in the early diagnosis of dementia."
Neutrophil Adhesion in Brain Capillaries Reduces Cortical Blood Flow and Impairs Memory Function in Alzheimer's Disease Mouse Models
By: Jean C. Cruz Hernandez et al.
published in Nature Neuroscience
"... brain blood flow deficits are one of the earliest detectable symptoms of dementia."
from: BioMed Central Ltd Springer Nature Alzheimer's Research & Therapy20179:37
By: Jessica Mira Gabin et al.
"... Association between blood pressure and Alzheimer disease measured up to 27 years prior to diagnosis ..."
I am a Neurologist/Researcher based in Canada doing research for therapeutics in advanced dementia to improve quality of life and ease caregiver burden, a surrogate marker for pain and discomfort in those affected by end stage Alzheimer's disease (AD) and other dementias.
I am looking to correspond with a senior member of the scientific advisory board of the National Alzheimer's Project Act (NAPA) and hoping this message can be directed to an appropriate individual within the organization.
While much investment in research has been targeting pre-clinical stages of AD, my research relates to using Botulinum Toxin, a drug on the market for decades and deemed safe, to address involuntary postures in people with advanced AD to prevent painful contractures, and consequences of these, like pressure sores and spontaneous fractures. There is also reduced pain, infections and suffering.
Families are reporting to us that with treatment, their loved one has dignity and comfort which has a huge impact on their loved one and their own (caregiver) quality of life.
I am looking at "outside the box" approaches to pursuing additional research in this area as well as wider recognition that this could be potentially available as currently there is no pharmacological therapeutic agent available to treat symptoms of advanced AD and people are suffering which could be ameliorated.
My ultimate goal is to perform large scale FDA registration trials to recreate our results and result in an "approved indication" for palliative treatment of advanced dementia and improvement in quality of life.
While I am pursuing NIH and other funding to move forward this research, I am also reaching out to other organizations that represent people living with AD and their families, to inform them of this treatment, garner support, and seek additional partnerships and collaboration with relevant stakeholders.
One barrier to commercialization regarding this potential successful treatment to manage this terrible condition is re-imbursement policy in long-term care (LTC) such that currently, even if there were an FDA-approved indication, treatments would not be re-imbursed if the treatment was provided in the facility where a patient resides.
In contrast, in Canada, where I practice, I have been providing treatments in LTC for years with excellent benefit and cost savings as patients have less complications. As such, current policy related to LTC practices and reimbursements need to be reconsidered. This may require political will and access to policy makers to reconcile potentially outdated policy, with novel science that could revolutionize treatment as well as impact healthcare costs.
I would be very interested in connecting with the executive of NAPA to discuss potential alignments and would be very happy to provide a formal presentation of the project and my vision including aspects of policy and current standard of care currently available. It is very compelling. I believe this has the potential to affect millions of Americans affected by AD and other dementias and will look forward to hearing from you after your review of the research and executive summary attached herein.
Involuntary postures occur in advanced dementia due to increased tone called Paratonia. These postures lead to substantial morbidity and profound suffering and reduction in quality of life. Currently, 5M people in the US alone and 48M worldwide suffer from dementia. All people with dementia will eventually get paratonia and consequent involuntary postures. There is currently no effective treatment for Paratonia or its consequences.
Botulinum toxin A (BoNT) has been extensively developed marketed and implemented for decades demonstrating remarkable safety and efficacy. It works by making muscles temporarily weak when they are inappropriately overactive in the setting of a neurological condition. Stroke is one condition where treatment of stiff muscles with BoNT is the standard of care and is widely used as a first line treatment of “spasticity”, the neurological term applied to stiff muscles that are caused by stroke or other neurological injuries of the brain or spinal cord.
Spasticity is a complex phenomenon postulated to emanate from reduced inhibitory impulses resulting in increased signals for the muscles to contract. There is a specific pattern of stiffness recognized in stroke spasticity including flexed elbow, clenched fist, flexed knees and others. By making these selective muscles weak with BoNT, there is increased range of motion in those joints. Untreated, spastic muscles become permanently contracted a natural process where muscles undergo permanent changes in its properties as a result of being in a prolonged shortened state, to become a fibrous band which is fixed and untreatable. Treating with BoNT early may delay or prevent the formation of contractures. It is desirable to prevent contractures as these result in pressure ulcers, fractures, substantial pain and immobility with reduction in quality of life, increased caregiver burden and substantial increase in health care utilization and resources.
BoNT is considered the “standard of care” people to treat stroke-related spasticity with excellent outcomes to loosen the muscles and reduce contractures and their consequences. There have been large Phase III clinical trials for BoNT in spasticity and an FDA/Health Canada approved indication exists.
In Canada given the approved indication, there is also a successful re-imbursement process for the drug as well as for the practitioner who administers this product. There is a “limited-use” (LU) code for BoNT for stroke spasticity and in Ontario, Doctors travel to LTC facilities and provide “mobile clinics” so patients with limited mobility receive treatment at the bedside. In the US there is a more limited market as spasticity treatment with BoNT may only be performed in an outpatient clinic thereby in order for the drug to be re-imbursed thereby excluding patients with more advanced disease who may need it most. The re-imbursement policy in the US remains a barrier to full commercialization in the US for spasticity.
Due to the profound benefit of BoNT injection to reduce muscle tone in stroke spasticity, we hypothesized that treating those with dementia (who also have involuntary muscle postures identical to those in stroke but due to Paratonia, a different physiological mechanism and associated only with dementia), with BoNT would also have the same result of reducing involuntary postures with all the same benefits as for those receiving it for stroke spasticity.
Our small pilot trial “A Randomized, Placebo Controlled Pilot Trial of Botulinum Toxin for Paratonic Rigidity in People with Advanced Cognitive Impairment” published in 2014 in PLoS1 is the first to demonstrate safety and efficacy in using BoNT to treat involuntary postures in this frail elderly population, as well as feasibility to conduct methodologically rigorous studies in long term care. Magnitude of effect in terms of disability scales and improvement in range of motion are comparable or greater than those for upper limb spasticity due to stroke.
Given the “epidemic” of dementia with 15 million people in the US (136M worldwide) predicted to suffer dementia by 2050 with no neuroprotective OR symptomatic treatment available to address symptoms of dementia, the use of BoNT is an attractive strategy to manage costly complications of dementia and significantly improve quality of life in those with advanced symptoms.
Despite the promising therapeutic benefit and confirmed safety for a drug already developed and applied widely for decades in other well-studied indications like spasticity, the barrier to commercialization and lack of investment in the development of the indication to date by pharmaceutical companies, is due to the fact that this population resides (and suffers) in long-term care facilities where current re-imbursement policies in the US, prevent a clear path to re-imbursement as US policy dictates that treatment with BoNT must occur in an outpatient clinic and not in LTC. As people with advanced dementia have logistical barriers to travel away from LTC, current policy prevents access to treatment.
Well-designed multi-center trials are needed to confirm preliminary promising findings for the first treatment pharmacological treatment proposed to reduce pain and caregiver burden, a surrogate measure for suffering for those with advanced dementia. Success of such trials could result in a paradigm shift in how people with advanced dementia are managed with the US leading a global effort to improve standard of care for people with advanced AD.
JUNE 2019 COMMENTS
I am the CEO of a company called AlzBetter and we focus on helping companies provide person-centered care for people with dementia. We have a very unique approach including technology and targeted micro-learning videos. It looks like you are doing some very interesting work and I would like to see how I could become more involved in what you are doing. I look forward to hearing from you.
MAY 2019 COMMENTS
I am currently seeking research/resources regarding the initial design and layout of newly constructed memory care facilities. Can you offer/direct me to relevant materials?
APRIL 2019 COMMENTS
For those who don't know me, Alzheimer's and other forms of dementia have had a profound impact on my family. My husband and I have 3-out-of-4 parents impacted by the disease.
Person-centered care has been the theme of today's Council meeting. We know what person-centered dementia care SHOULD look like and more importantly, what it SHOULD NOT look like. I stopped by today to share a story about the latter. Person centered-ness includes the ability of families to access affordable home healthcare seamlessly. My father-in-law is a low-income senior, a veteran, and has Alzheimer's. He now requires 24x7 supervision and care. My mother-in-law and my husband worked for several years to complete all the paperwork and phone calls required to establish his eligibility for VA Aide and Attendance benefits and Medicaid. My mother-in-law was relieved when the VA finally agreed, last fall, to send a caregiver to assist her -- and the caregiver was well-versed in dementia care. The downside: she was limited to 6 hours per week.
My father-in-law's disease has progressed dramatically, and my mother-in-law needed more help. She turned to social services to get additional support and was told that the VA and Medicaid don't work together. In fact, if she accepts caregiving support that is paid for by Medicaid, she will have to give up the caregiver provided by the VA -- the well-trained, compassionate caregiver who has established a wonderful rapport with both of my in-laws. They are very hard to find, especially in rural Indiana.
Thanks to the relentless advocacy of both a local social worker and a case manager, the home care hours allotted by the VA recently increased to 16 per week -- better, but still not enough. So, my mother-in-law soldiers on... determined to keep her husband out of a nursing home for as long as possible but losing the battle because she does not have the support she needs.
The constant fight to get home care services for our loved ones with dementia is NOT person-centered care, it's shameful. I hope the Council will consider simplifying access to VA and Medicaid home healthcare services as part of it's on-going work to define what person-centered dementia care looks like moving forward.
I serve as President and CEO of the Alliance for Aging Research. Thank you for the opportunity to comment.
I believe everyone on this advisory council agrees that, only when working in partnership, can clinicians, patients and family caregivers identify values, goals, and preferences and make informed decisions about patient care. Shared decision-making is critical to person-centered care and should become the standard for informed consent in healthcare. Biological aging itself--let alone Alzheimer's disease and related dementias--increases the risk of morbidity and mortality, independent of treatment interventions. And even clinicians trained in geriatrics can have inaccurate impressions of what matters most to their individual older adult patients.
There is a high unmet medical need for neuropsychiatric symptoms in dementia care. Although some evidence-based psychosocial interventions have shown promise in managing these symptoms, they do not always work in isolation. We are encouraged that the clinical pipeline for Alzheimer's disease and related dementias includes promising treatments for agitation and dementia-related psychosis and we hope CMS is monitoring these developments as they move through the FDA approval process.
Among people with Alzheimer's disease, depression is the earliest observable symptom in at least one-third of cases. Additionally, milder symptoms of agitation may manifest early and increase in prevalence and severity with worsening of dementia, often leading to an increase in family caregiver burden, greater morbidity, poorer quality of life, increased cost of care, rapid disease progression, and institutionalization. Many nursing homes lack the staff ratios and adequate training to deal with increasingly complex residents with dementia. So, it is understandable that we have looked to quick fixes, such as mandating the reduction of psychotropic prescriptions, without first understanding the potential impacts on proper diagnosis and treatment of either dementia or NPS. I fear nursing homes will be afraid to even consider new FDA-approved medications, and residents will be left to suffer severe symptoms needlessly.
There is a lack of data-driven information on which to base decisions regarding improvements to dementia care, such as the best potential treatments for agitation in dementia, and the benefits and drawbacks associated with bifurcating treatment for psychosis and agitation.
In April 2005, the FDA issued a "black-box" warning for atypical antipsychotics in the treatment of NPS in older patients with dementia because of a 1.6- to 1.7-fold higher death rate in those taking such drugs compared with those taking placebo. In a pivotal RCT of demented patients already on conventional or atypical antipsychotics, 3-year survival doubled in those randomized to cease treatment. However, a large longitudinal observational study published in the September 2013 issue of the American Journal of Psychiatry challenged these findings by showing that the primary correlate of negative outcomes was the psychiatric symptomatology and not the drugs used to treat these symptoms.
There are few programs that integrate physical and mental healthcare for those with dementia in both institutional and community settings, and this is sorely needed. There is ripe opportunity to openly dialogue about the upcoming clinical pipeline; the third phase of the CMS mega rule and its provisions on NPS and dementia; and how patient advocacy organizations, professional groups, and industry can work with regulators to ensure that all of CMS' available policy levers in coverage and payment are engaged to provide the best care possible for beneficiaries with dementia. The Alliance for Aging Research would like the opportunity to convene with CMS and relevant stakeholders this summer to achieve this dialogue and help initiate practical recommendations prior to implementation of the last phase of the mega rule.
Let's do this together. Millions of beneficiaries stand to benefit and there's no time like the present. Thank you.
Otsuka America Pharmaceutical, Inc. (Otsuka) is pleased to submit the following comments for this meeting of the Advisory Council on Alzheimer's Research, Care, and Services. Otsuka appreciates HHS and ASPE's continued efforts to improve the level and quality of care for patients living with Alzheimer's disease and other forms of dementia. Like many other stakeholders, we are concerned about the use of antipsychotics in Alzheimer's patients and residents of long-term care facilities.
An estimated 5.5 million people age 65 and older in the US have Alzheimer's disease.1 In addition to cognitive decline and other neuropsychiatric symptoms, agitation is a common symptom of Alzheimer's disease that reduces health outcomes and increases costs and burden.2 As federal policymakers consider what has been achieved to date (antipsychotic usage in nursing homes reduced by 38%) and consider ways to further reduce unnecessary prescription use, Otsuka would highlight the following points:
- Federal policies should support thorough evaluation and treatment of patients with behavioral health issues living in long-term care facilities. Behavioral health issues may stem from varied sources, and should be addressed differently based on the underlying disease:
- For behavioral health issues related to underlying serious mental illness such as depression, bipolar disorder, or schizophrenia, antipsychotic medications are on-label for these uses and federal policies should not restrict appropriate access to these medications to patients for whom they are in fact appropriate.
- For behavioral health associated with Alzheimer's disease, such as agitation, non-pharmacologic interventions should be considered first to address other potential underlying causes and factors. Exceptions should be made in the case of emergent or acute episodes, or for patients currently stabilized on an antipsychotic for a previously diagnosed or co-occurring mental illness.
- Antipsychotic medications should be reasonably limited for use with dementia-related behaviors unresponsive to nonpharmacologic interventions, and within sound clinical guidelines and appropriately labelled indications for use. Although acute and/or persistent neuropsychiatric symptoms may not respond adequately to nonpharmacologic interventions alone, nonpharmacologic approaches should be evaluated for the potential to permit treatment with lower doses of antipsychotic medications.
- Federal policies should recognize and support appropriate and necessary use of antipsychotic medications for patients with neuropsychiatric symptoms.
- For antipsychotic use in long-term care facilities, policies should evaluate on-label and off-label use differently. Typical antipsychotics currently used off-label to treat agitation have significant side effects, including over-sedation.3
- Policy frameworks can and should differentiate between the use of antipsychotics for sedation or chemical restraint, both serious forms of patient abuse, and for the treatment of mental illness and dementia-related neuropsychiatric symptoms that improve patients' quality of life.
- Clinical indications and effectiveness should be reviewed periodically for all medications, including antipsychotics; however, attempts at gradual dose reduction may be inappropriate or clinically contraindicated for some patients whose behavioral symptoms are currently stabilized or who have a diagnosed serious mental illness.
Burden and impact of agitation in Alzheimer's disease
Behavioral symptoms develop in the majority of people with Alzheimer's disease and many of these symptoms are clinically diagnosed as "agitation," including restlessness, significant emotional distress, aggressive behaviors, and irritability. Symptoms of agitation place a serious burden on the people afflicted with the disease and their caregivers, significantly affecting the quality of life for all concerned. Agitation is often a determining factor in the decision to place patients in high-level residential care facilities, contributing to the roughly $259 billion cost burden of Alzheimer's disease in the U.S.4
Otsuka believes the Advisory Council should further consider the prevalence and clinical and economic burden of agitation in Alzheimer's disease when evaluating current programs and future efforts that impact people living with Alzheimer's and their caregivers. Specifically, the Council should keep in mind:
- Agitation covers a large group of behaviors occurring in patients with Alzheimer's disease, and is an excessive/inappropriate manifestation of 'normal' human emotions and behaviors. Symptoms of agitation include:
- Excessive motor activity (e.g. pacing, rocking, gesturing, pointing fingers, restlessness, performing repetitious mannerisms).
- Verbal aggression (e.g. yelling, speaking in an excessively loud voice, using profanity, screaming, shouting).
- Physical aggression (e.g. grabbing, shoving, pushing, resisting, hitting others, kicking objects or people, scratching, biting, throwing objects, hitting self, slamming doors, tearing things, and destroying property).5
- Symptoms of agitation in Alzheimer's disease are associated with significant burden and negative consequences for the patient.6,7,8,9,10,11
- Physical activity offers promise for the prevention of cognitive decline in older patients with Alzheimer's disease. A study in 437 elderly patients with a range of dementia severities shows that symptoms of agitation (as measured by the Neuropsychiatric Inventory, NPI) are associated with lower rates of participation in physical activities.12
- Symptoms of agitation, such as becoming upset easily, hoarding, and rejection of care such as bathing and dressing can interfere with the ability of a patient with Alzheimer's disease to carry out the activities of daily living.13
- Agitation and aggression commonly arise in people with Alzheimer's disease. This can be distressing for the individual and often confers risk to themselves and to others.14
- Symptoms of agitation in patients with Alzheimer's disease are associated with high burden and negative health, social and economic consequences for their caregivers.
- Fifty-nine percent of family caregivers of people with Alzheimer's and other dementias rated the emotional stress of caregiving as high or very high.15 In particular, problem behaviors (such as agitation) are consistently related to caregiver distress and depression.16,17
- Neuropsychiatric symptoms in Alzheimer's disease, including agitation, are associated with reduced employment income for caregivers.18 Data from the US report that almost 60% of US family caregivers of people with dementia are also employed; two thirds of these reported that they missed work, 8% that they turned down promotion opportunities, and up to 31% that they had given up work to attend to caregiving responsibilities.19
- Neuropsychiatric symptoms, including agitation can result in earlier placement in long-term care.20
- "...high frequency of distressing behavioural symptoms in patients with dementia can contribute to caregiver burnout, which is the most common cause of institutionalization of patients with dementia."21
- A systematic review of 80 studies found that behavioral symptoms, such as agitation, were a consistent predictor of nursing home admission in patients with dementia.22
- A 6-month study of the detailed clinical records of 3075 patients with Alzheimer's disease found that patients with symptoms of agitation were significantly more likely to be admitted to long-term care (care home, general hospital inpatient or mental health inpatient admission) during the course of the study than patients without (OR 1.97 [95% confidence interval (CI), 1.59-2.42], P<0.01).23
- Caregiver stress due to caring for an individual with behavioral symptoms (such as agitation) increases the chance that they will place the care recipient in a nursing home.24
- Behavioral symptoms present a dilemma to clinicians and care providers in a long-term care setting since disruptive or dangerous behavior requires attention and resources that are not always available.25
- Within long-term care facilities, 40-60% of Alzheimer's disease patients exhibit symptoms of agitation and aggression.26
- In a multicenter study comprising 236 patients with mild to moderate Alzheimer's disease followed over 5 years to map the natural course of illness, the percentage of patients per year experiencing agitation/wandering was 39-57%, and the percentage per year exhibiting physical aggression was 6-22%.27
- Patients diagnosed with Alzheimer's disease benefit from the development of a comprehensive treatment plan encompassing non-pharmocological and pharmacological interventions.28
- Nonpharmacological treatments for behaviors associated with Alzheimer's disease include activities such as identifying and eliminating triggers, environmental simplification, and structuring daily routines.29
- Current pharmacological treatments for agitation are associated with significant safety and tolerability trade-offs: "...as there are currently no FDA-approved pharmacological treatments for agitation in AD [Alzheimer's disease], clinicians ultimately resort to off-label use of antipsychotics, sedatives/hypnotics, anxiolytics and antidepressants in an attempt to control symptoms. Unfortunately, these treatments have limited utility given a modest efficacy that is offset by relatively poor adherence, safety and tolerability."30
- Treatment of symptoms of agitation in patients with Alzheimer's disease reduces caregiver burden and the cost of care for the patient.31
- Reducing the symptoms of agitation in a patient with Alzheimer's disease allows the caregiver to continue to manage the patient's activities of daily living at home.32
- Facilitating home care can delay the move from home to a long-term care setting, which has greater costs than home care by family. Annual residential cost per patient are: $48,000 in assisted living facilities, $89,297 in a nursing home, and $100,375 in a private room in a nursing home.33
* * *
Otsuka appreciates the Advisory Council's consideration of our comments. We stand ready to assist with any of the issues raised in our letter. Please contact Thad Flood with any questions.
- Alzheimer's Association 2018. Facts and Figures 2018. Retrieved from https://www.alz.org/media/Documents/facts-and-figures-2018-r.pdf.
- Aigbogunet al. Treatment patterns and burden of behavioral disturbances in patients with dementia in the United States: a claims database analysis. BMC Neurology 2019; 19:33.
- American Psychiatric Association 2016, The APA Practice Guideline.
- Alzheimer's Association. 2017 Alzheimer's disease facts and figures. 2017; 13:325-373
- Cummings et al. Agitation in cognitive disorders: International Psychogeriatric Association provisional consensus clinical and research definition, Int'l Psychogeriatrics (2015), 27:1, 7-17.
- Kales et al. Assessment and management of behavioral and psychological symptoms of dementia, BMJ 2015; 350:h369.
- Peters et al. Neuropsychiatric Symptoms as Predictors of Progression to Severe Alzheimer's Dementia and Death: The Cache County Dementia Progression Study, Am J Psychiatry 2015; 172:460-465.
- Scarmeas et al. Disruptive Behavior as a Predictor in Alzheimer Disease, Arch Neurol. 2007 December; 64(12): 1755-1761.
- Wilcock et al. Memantine for Agitation/Aggression and Psychosis in Moderately Severe to Severe Alzheimer's Disease: A Pooled Analysis of 3 Studies, J Clin Psychiatry 2008; 69:341-348.
- Banerjee et al. Quality of life in dementia: more than just cognition. An analysis of associations with quality of life in dementia, Neurol Neurosurg Psychiatry 2006;77:146-148.
- Arbus et al. Incidence and Predictive Factors of Depressive Symptoms in Alzheimer's Disease: The Real.FR Study, JNHA 2011; Vol. 15.
- Watts et al. (July, 2016) Neuropsychiatric Symptoms are a Barrier to Engegement in Physical Activity. Alzheimer's Association International Conference, Toronto.
- Lyketsos et al. Neuropsychiatric symptoms in Alzheimer's disease, Alzheimers Dement. 2011; 7(5): 532-539.
- Ballard et al. Agitation and aggression in people with Alzheimer's disease, Curr Opin Psychiatry 2013, 26:252-259.
- Alzheimer's Association 2015. Fact and Figures 2015. Retrieved from https://www.alz.org/media/Documents/2015FactsAndFigures.pdf.
- Pinquart et al. Associations of Stressors and Uplifts of Caregiving with Caregiver Burden and Depressive Mood: A Meta-Analysis, Journal of Gerontology: Psychological Sciences 2003, Vol. 58B, No. 2, 112-128.
- Schulz et al. Psychiatric and Physical Morbidity Effects of Dementia Caregiving: Prevalence, Correlates, and Causes, Gerontologist (1995) Vol. 35, No.6, 771-791.
- Kales et al. 2015
- Brodaty et al. Family caregivers of people with dementia, Dialogues Clin Neurosci. 2009; 11:217-228.
- Kales et al. 2015
- Blake et al. (March, 2002) Optimal Management of Psychosis & Agitation in the Elderly, Medscape. Retrieved 1/5/2017 from: http://www.medscape.org/viewarticle/429889.
- Gaugler et al. Predictors of Nursing Home Admission for Person with Dementia, Med Care 2009;47: 191-198.
- Knapp et al. Predictors of care home and hospital admissions and their costs for older people with Alzheimer's disease: findings from a large London case register, BMJ Open 2016; 6:e013591.
- Yaffe et al. Patient and Caregiver Characteristics and Nursing Home Placement in Patients with Dementia, JAMA April 2002; Vol. 287, No. 16.
- Greenblatt et al. Use of Antipsychotics for the Treatment of Behavioral Symptoms of Dementia, J Clin Pharmacology 2016, 56(9) 1048-1057.
- Gauthier et al. Management of behavioral problems in Alzheimer's disease, Int'l Psychogeriatrics (2010); 22:1, 346-372.
- Holtzer et al. Psychopathological Features in Alzheimer's Disease: Course and Relationship with Cognitive Status, JAGS 51:953-960, 2003.
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Thank you for the opportunity to address the Council. I am the mother of a 44-year-old gentleman who has Down syndrome, autism and Alzheimer's.
For several years I have co-facilitated the NTG national online support group and administered a Facebook support group for families who love someone with Down syndrome and Alzheimer's disease. My comments today come from conversations we have had in the past couple of months.
In the middle of February, a sibling posted on the Facebook group page about her frustration trying to find out-of-home care for her brother who is requiring more assistance. Paula, her sister Becky, and others have given me permission to share their stories.
From Paula & Becky, siblings to Matt:
"Matt is 46-year-old man who has Down's Syndrome (Trisomy 21). About 8-10 years ago he started exhibiting signs of changes. He seemed to be growing older. He wanted to "retire" from his workshop. He was less social. He began interacting verbally and physically with "people" only he could see. Sometime around the fall of 2012 Matt received a confirmed diagnosis of Dementia, likely early Alzheimer's, that was tacked on to the existing diagnosis of Intellectual Developmental Disability (IDD) he already carried. The problem now is that the healthcare system, is not ready for Matt. They aren't ready for Dementia in Down's (sic) Syndrome.
"Currently Matt is having an exacerbation of psychosis. His meds have been adjusted. Melatonin was added for sleep. He sleeps better, but he hasn't had relief from the psychosis and has begun elopement. Currently there is about 12 inches of snow on the ground. The temperature dips into the single digits at night and not above freezing during the day. When Matt elopes, he is found walking in shorts and sleeveless shirt. Sometimes he gets a coat but does not fasten it up. He does not get gloves or a hat. He wears tennis shoes but has gone out without shoes. He walks looking for Paula's car. He runs into the street without looking when he is pursued by staff. He has been found sitting in unlocked cars waiting (for) her. (It is against fire code in his residence to keep the doors locked although they are now alarmed).
"Paula would like to move Matt to a skilled care facility w/locked doors and specially trained staff. Why not? Because his primary diagnosis is IDD and Dementia is secondary. Those lovely places only care for patients with primary Alzheimer's & Dementia, or Parkinson's & Dementia, etc. WHAAA? Yep, they can't/won't take him because legally they can't keep a patient with IDD in a facility with more than 8 beds. What about the places for people with IDD? They aren't equipped or trained for Dementia/Alzheimer's. Really. There is a place Matt could go for a behavior analysis. It is a locked facility with highly trained staff where they would cease all medications and observe him then add medicine back one at a time to assess effectiveness and hopefully provide him with some relief of the psychosis and he could return to his residence safely, or they would definitively say the dementia is the primary diagnosis and he could be placed in a safer home. It is full, and he is on a waiting list. He could possibly get in sooner if he was in crisis.
"Last Thursday (2/14/19) Matt was in crisis with psychosis and attempted elopement. He left his group home, convinced he was escaping from being held hostage, ill-equipped for the weather. When staff members and housemates attempted to get him back inside to safety, he became physically aggressive. This crisis, although unfortunate, was timely because there are measures in place for crisis intervention situations like this that could place Matt exactly where we needed him to be for re-evaluation of his needs and diagnosis. Paula was meeting with her dementia caregiver support group when she got the call and there were professionals on hand to start this intervention.
"Specifically, there are two legal provisions in Wisconsin called Chapter 51 and Chapter 55. Under the statues the county board designates who can enact these provisions. For Monroe County it is the Sheriff's Department and the Health Dept/Adult Protective Services. The appropriate calls were made to activate this crisis intervention system, and no one would take the ball and run with it. NO ONE! They passed the ball from one agency to another. Adult Protective Services (APS) said the Sheriff's Department does that. The Sheriff's Department said to call APS because they hadn't done that for years.
"So now we must allow another unsafe situation--a crisis. Basically, the alarms will be shut off and he will be allowed to leave his home, maybe with a coat or maybe not, probably with shoes, but no hat or gloves, in shorts in single digit temperatures, risking frostbite or other injury. Then 911 will be called and hopefully the designated entities will execute the plan the statutes dictate. We are waiting for an appointment with another healthcare provider qualified to assess a patient with Down's Syndrome and Dementia, but it may take months to get into that doctor which is not soon enough to help with this elopement issue in the dead of winter.
Paula wanted to just take him home with her Thursday and wait for medical intervention, but once he is in a safe environment it could be months before they get help. It will only be weeks before Matt becomes agitated with her home and begins elopement there. Paula lives in the country and the risk of him getting horribly lost there is much greater. It is our intention to start unraveling the tangled web of bureaucracy that is jeopardizing the care and safety of people with an Intellectual Developmental Disability and Dementia. It is a brave choice she makes that contradicts everything she has ever done for Matt. It is a choice none of us ever thought she would have to make. It will hopefully awaken the health care policy makers to the realization that there is much work to be done to ensure the safe and seamless continuity of care for people like Matt. Please, keep him in your prayers and share his story. Hopefully someone has an answer that gets us to the finish line swiftly and safely." Paula and Becky
Paula and Becky provide one example of the barriers faced by families who have loved ones with Down syndrome and an additional diagnosis of Alzheimer's. Several other family members commented that they had also hit brick walls when seeking support outside the home. Studies show that people with Down syndrome face accelerated aging and thus in their 40s and 50s have health care needs more closely resembling that of people already in their 60s and 70s.
Here are some quotes from other families:
- "When I started calling around to get respite care for a week, I was told it would have to be short term nursing home facility in our area, so when I called about those, I was told they only accommodate for those over 65." Cathy
- "The group home staff are not trained, and our ERs have no idea how to help my son...I truly believe that our world was never prepared for their aging process, and still isn't. Our loved ones seem to be the forgotten population!!" Joann
- "So far though, I am beginning to feel every resource or suggestion with every good intention is just a band aid not really addressing the heart of the problem -- adequate health care and placement for Connie!!! So, unless you can quit your job or work like a dog working full time while patching care for your loved one there isn't anything out there suitable as your loved one declines." Mary
- "I am attending a HUGE event today...It is an all-encompassing conference regarding dementia and Alzheimer's. Except...for those with DS (Down syndrome). So once again, I am left floundering for connections for my sister. I am now armed with brochures and business cards, free lip balm, chocolates, and chip clips with the names of all these agencies that cannot help me." Peg
- "It is sad that our social workers, nurses, doctors, politicians, CBRF (Community Based Residential Facility) owners/caregivers, administrators at nursing homes and hospitals continue to keep our loved ones on this roller coaster of assistance that is either misleading, inappropriate, inadequate care available to our loved ones with DS/Alzheimer's! Most memory care don't accept Alzheimer's patients with a disability. Most won't take straight Medicaid. Most memory care facilities lack staff that are trained to care for someone with DS and Alzheimer's." Mary
- "I was sitting next to my sister waiting for a bed in the ED (Emergency Department) when I received a phone call from the hospital. ...it was a doctor; he wanted to discuss my sister's diagnosis and plan of care. You tell me how a physician can call me when he hasn't even physically seen or assessed my sister since I was with her the whole time. ...he apologetically laughed and said he didn't know family was with her and it isn't commonplace. ...if no family is present that justifies not treating someone with a disability just as you would anyone else? Is that why the CBRF don't like it when family are around in the home too?" Mary
- "My experience has been that seeking emergency care with doctors that see his Downs first, develop an attitude of hurry up and treat and send you on your way attitude. He has had dozens of hospitalizations during his life. Healing comes from proper diagnosis, caring medical professionals, and acknowledgement that parents are some of the best resource to develop a treatment plan. Our dear special children are people first who have many challenges to face and overcome and move forward. Caring medical and social service personnel can lighten this load or add to it. Parents know our children best and need to be listened to." Judith
- "My son, Matthew who has Alzheimer's has become very combative. After a 911 call, he was taken to the hospital and sedated with Seroquel. Then the hospital told us that they couldn't keep him because he didn't have a medical problem. We call the local Regional Center and requested emergency placement until we could develop a plan. We were told that they couldn't place him because he was a danger. We were left on our own to figure this out, and I did. I found a good Memory Care facility that would take Matthew. But now I'm facing the issue of coming up with about $6,000.00 because we did the placement and not Regional Center. He is still a little aggressive mostly very loud and yelling, and I don't feel that I can bring him home yet. He has lived at home all of his 47 years and this is really difficult for all of us, and I feel "abandoned" by the system that is supposed to be there to provide assistance. At a loss as to what to do." Susan
- "Today, for the SECOND time, I contacted the Alzheimer's Association administrator & pretty much begged them to open a forum for Caregivers of Aging Down Syndrome. They came back, AGAIN, & thanked me & pretty much said they didn't think there was a need for that type of forum. It flabbergasts me when even the Alzheimer's Association doesn't understand or see the need." Pam
I ask why it is the families I have come to know -- in various parts of the country -- have such similar stories.
I know that my friend and colleague, Mary Hogan has spoken to this Advisory Council for many years about the exclusion of people with Down syndrome and Alzheimer's in many aspects of research and community care. I am left wondering if we are being heard. From 1998 to 2003, I worked for the State of Florida in the central office of the Florida Developmental Disabilities Program. During the four and one-half years I was there my goal was to bring a family voice to the decisions that were being made -- decisions that had direct impact on people like my son. I left feeling like my only accomplishment was a bloodied head from the wall that seemed to be firmly in place. When I hear these stories from families around the country, it seems nothing has changed.
I hear from parents and siblings who care deeply about family members with Down syndrome as they are treated differently, given less than equal care in the medical field and are unable to access community services that their neighbor without disability can obtain. No one should have to spend an entire lifetime in a fight for every service they deserve, every service they need. It is wrong and I implore this group to help us take steps to end this disparity. I strongly urge you to continue to push for full inclusion of people with Down syndrome and Alzheimer's in all federally funded community programs and research.
|My amazing son Matt
||Paula's and Becky's brother Matt
||Cathy's daughter, Shelby holding her new niece with Down syndrome
||Mary's sister, Connie, with her niece
||Pam's sister Deb
Hello my name is Diana Blackwelder, I am 57 years old and I was diagnosed with Younger Onset Alzheimer's Disease in 2017. I thank you for the opportunity to provide input regarding this session's focus topic of person centered planning and implementation of care plans for people living with cognitive symptoms. After all, person centered planning should begin with input from the person(s). As always, I invite you reach out to me and my peers also living with various forms of dementia for further discussion as two minutes is insufficient to go into much detail regarding this very important subject.
I am single, live alone, and before Alzheimer's robbed me of my professional career, I performed complex IT systems integration and software security engineering. Now I focus on modifying my living environment and processes to best support myself and my changing cognitive abilities. I desire to remain as independent and self-sufficient for as long as possible. I have conveyed to my POA person that I refuse to become a resident in any form of memory care facility. I choose not to be locked away with my only interaction being those decades my senior in advanced stages of dementia and under-paid and inadequately trained staff. America treats prisoners more humanely. Fortunately, I have the financial wherewithal and a POA person required to support this desire not to be locked away, deprived privacy and independence and choice and likely drugged into compliance with little or no intellectually appropriate stimulation or access to large greenspaces, sunshine and fresh air.
My 2 years of experience living with dementia since diagnosis and performing extensive research and learning about dementia and services at the local, national and world level has shown me that our focus on researching a cure and providing respite & education for caregivers serves to prove that the stigma that those with dementia lose their intelligence and can't do anything for themselves without supervision persists. This has persisted far too long. I am here to dispel the stigmas about Alzheimer's by example. We need to be empowered to maximize and extend our self-sufficiency for as long as possible even if that increases risk to us. None of us live forever. We want and need to thrive not merely exist. Therefore, care plans must include education, peer and professional led support groups and appropriate activities for the person living with the dementia. So many support groups either exist solely for the caregivers or if they include an ancillary group for the caregiver to "drop off" the person living with the disease, those groups merely provide babysitting services with at best activities better suited for children than intelligent adults with memory issues.
I feel like I need to repeat myself. We do not lose our intelligence and even as we forget some of our life and professional experiences, those experiences have served to shape who we are and that doesn't fade away. What fades away is our ability to communicate with language. What fades away are nerve impulses that help us control our bowels and other bodily functions like swallowing. What fades away are our ability to juggle in super short term conscious memory all the information that helps us process logical thought. Our feelings, our emotions, and our intelligence, all remain intact so care planning needs to leverage and respect these things. When caregivers see our moods changing it is more likely the result of our environment and the impacts to us than the direct result of a disease process. I already am deeply stressed by our normal public environment and must control my exposure. If I lose that ability to control the exposure, I expect I like others in the later stages of dementia will become agitated due to the frustration of not being able to control my environment.
Being single with no family support system, and this not being unique; I strongly advocate that care plans must consider leveraging nontraditional support systems. Some starting points are in existence today but are not leveraged or included in care plans. They include Villages [https://www.aarp.org/home-garden/livable-communities/info-04-2011/villages-real-social-network.html] and organizations like Dementia Action Alliance [https://daanow.org/our-mission/] and Dementia Alliance International [https://www.dementiaallianceinternational.org/] that leverage grass roots efforts of community helping community. Villages do this on a micro level in small neighborhoods [https://dcv.clubexpress.com/content.aspx?page_id=22&club_id=161481&module_id=160518], DAA does this by integrating those living with dementia and professional experts working together to implement virtual education and support and hosting an education and awareness dementia conference [https://daanow.org/conferences/] (this June in Atlanta) and Dementia Mentors [https://www.dementiamentors.org/] where the Mentors are trained mentors also living with dementia for example. DAI works on a global scale also virtually through virtual support groups by and for people living with dementia as well as advocacy through the World Health Organization and other agencies worldwide. These grass roots organizations need your recognition and support and to be included as tools to leverage when implementing care plans.
In my written submission, I have also included informative follow up to my January public comment and information of relevant activities currently underway in congress (See below)
As follow up on my January comments about the Smithsonian See Me and National Gallery of Art Just Us Programs for people living with dementia, I am pleased to report that both of these programs have restarted and that the See Me program has recently expanded to include not The American History Museum in addition to the Smithsonian American Art, Portrait Gallery, African Art, and Freer Museums. These are programs that respect our intelligence and recognize we have a cognitive disability and many of us advanced age as they create a physical, emotional and communicative environment that accommodates these disabilities while providing us varied opportunities to socialize, communicate and experience Art and History. I hope these programs receive your respect and support they so deservedly have and continue to earn with each program they execute.
As follow up re my comments about the DC Office of Aging, I have had meetings with many within DC Government including the Director and Executive Director for the now renamed Dept. of Aging and Community Living as well as others including the Mayor's budget director and Process Director for Health & Human Services to name a few. I have learned that almost all services offered receive at least partial funding through Grants from the Older Americans Act and it is this funding source that sets an age restriction on services that excludes all like me with Younger Onset Alzheimer's. While this is a large part of the issue with the lack of services, it isn't the only issue at hand. However, it is one that exists throughout the country and hence is very pervasive. A bill was recently introduced to congress to rectify this situation. I hope all those on this panel will proactively leverage their influence with the legislature to help this bill to pass. It is the bi-partisan Younger-Onset Alzheimer's Disease Act of 2019 [https://www.congress.gov/bill/115th-congress/house-bill/1903] HR 1903 & S 901. See Alzheimer's Association Fact Sheet at https://alzimpact.org/media/serve/id/5c9e439d96939.
As additional information regarding the implementation of care plans in the Alzheimer's Associations' 2019 Facts and Figures [https://www.alz.org/alzheimers-dementia/facts-figures], it is shown that only 16 percent of seniors even receive a cognitive exam so care planning cannot begin until the diagnosis and then only 33 percent of those with the disease actually receive a diagnosis. Therefore care planning is often started in the later stages of the disease when it is harder to get input from the person living with the disease due to diminished communication skills. Another bipartisan bill is currently before congress that is also a priority for the Alzheimer's Association [http://act.alz.org/site/PageNavigator/Advocacy_PublicPolicy/HOPEforAlzheimersAct.html] and I believe should be a priority for NAPA as well. It is the Improving HOPE for Alzheimer's Act [https://www.congress.gov/bill/116th-congress/house-bill/1873?q=%7B%22search%22%3A%5B%22hr1873%22%5D%7D&s=1&r=1] HR 1873 and S 880. A fact sheet is available at http://act.alz.org/site/DocServer/hope_for_alz_fact_sheet.pdf?docID=3021. It is focused on increasing the currently abysmal rate of care planning services even discussed by doctors when diagnosing Alzheimer's and other dementias and likely causes many doctors to withhold the diagnosis due to lack of time and resources to provide this information and support so critical to the wellbeing both mentally and physically for those with the disease and their care givers.
AFTD is deeply appreciative of how inclusive the advisory council has been of FTD and the related dementias. The recent ADRD summit at NIH last month is just one example of how NAPA has included the related dementias in the discussion of how to prepare the nation for the impact of these diseases. It is convenient to think that different types of dementia conform to the names we have given them, each with its own set of symptoms and underlying pathologies. One of the messages I took home from the summit was simply how untrue that is. In fact, most cases of dementia are pathologically mixed and multiple presenters discussed the role of TDP-43 in various forms of dementia including an entirely new disease entity called limbic-predominant age-related TDP-43 encephalopathy, or LATE.
Considering how messy dementia really is, both in life and pathologically I urge the council to consider dedicating one of the NGO seats to a representative from an Alzheimer focused organization and the other to a group that focuses on the related dementias. It is becoming clearer that the challenges of dementia must be met with multiple strategies and there are many more dementia advocacy organizations that represent the ADRD community that would add a valuable perspective to the advisory council.
MARCH 2019 COMMENTS
I am attending Texas Tech for my Master's in administration. I am currently working on a paper and it is on Alzheimer's Disease. I picked this topic because I did my volunteer hours at a Alzheimer's facility. I have 5 questions that I would need answered, I will put them in the email, and would greatly appreciate your help with my assignment. Thank you for your time.
- Do you feel that there is enough research being done on Alzheimer's disease?
- Do you feel that the caretakers of Alzheimer's patients are getting any help from the community, county or government?
- Do you feel that enough education on early diagnosis for Alzheimer's is being done?
- What are the benefits of an adult day care type services for a Alzheimer Patient? And is government assistance or other types of assistance offered to help cover the costs?
- What is your thoughts on how to make sure we target the populations that are mostly affected by Alzheimer's, which are women, African Americans, Hispanics, and people living in rural areas, to make sure they know their lifestyle can increase their risk of getting Alzheimer's disease?
I wholly endorse the recommended 5-point plan for the National Alzheimer's Project Act, however, I feel that it necessary to address this plan using a Posthumanist approach to dementia care. Our current social policies view dementia care options with a Humanist lens, but gerontology has recently begun to take on an increasingly post-humanist approach. The former holds an outdated and limited definition of what an autonomous older adult can be, while the latter expands that definition in a way that takes into consideration our increasingly technologically progressive society. Current research is making headway in biotechnological advancements that could extend the ability to age in place with dementia safely and comfortably. Such assistive technology can allow individuals with Alzheimer's and Alzheimer's related dementia to live fuller, more independent lives, without the increasing and extensive cost of both formal and informal caregiving. Other countries have already begun to explore these possibilities. Consider the following resources:
Currently, dementia has no treatment, no cure, no preventative care, and no way to slow it down (CDC, 2018). However, current technology does exist that can improve the quality of lives of these individuals. As persons with dementia begin to lose their autonomy and ability to reason, assistive technology and human enhancement can be key in maintaining their personhood and decision-making potential. I hope that these considerations will be kept in mind in the revision of the NAPA moving forward.
JANUARY 2019 COMMENTS
Please read this at the meeting. Thanks
“Stigma and discrimination against dementia is more disabling than the illness itself. And you folks need to change that by making the awareness needed to help us. Its time for change already.”
Per the meeting announcement, comments for the meeting had to be sent in by COB January 22. I will share you comment with the Council and include it online.
This is exactly why I ask to be able to speak on a conference call. It takes me so long to form my thoughts and sentences and then I need someone to check them out which is not always easy. I have not made comments for al long time and was hoping to say even more but I had to wait for your Agenda which did not come out till Wednesday, January 23, 2019 3:50 PM. I need to digest that so I know what I many need to say. I also have bad days and good days so I am not always capable of even thinking to do this but I do give it 110 presents.
It really saddens me to see your reply from an organization that is supposed to help people with dementia that just don’t ever seem to really care for them to make any kind of exception under the disability laws. Sham on you for making people think you really want to help people like me.
I do hope you reconsider my reading as it takes so little time.
And by the way I started to reply back to you the moment you sent this to me but it has taken me this long the be able to do that. I hope you are never disabled like this to feel like you are useless because of the way others make you feel.
I would also like my reply to be added to your public record. I am so confused these days that I don’t even know what to do anymore but I am not giving up because of people like you.
I would just like to say that I am very disappointed that you could not take 20 seconds to read my comment at the public comments section today. While you have a 2-minute rule to speak most spoke over 5 minutes. It seems that your regulations only apply to me when I speak.
I truly can not understand why you would not make such a simple accommodation.
Hello my name is Diana Blackwelder, I am 57 years old and I was diagnosed with Younger Onset Alzheimer's Disease in 2017. I would like to thank you for the opportunity to provide suggestions for ways to facilitate those of us on the Alzheimer's journey to live as independently and fully as possible based on my lived experience during the early stage of the disease. The points I will raise are what I feel are most important and relevant to this panel today. I implore you to reach out to me afterwards for further discussion as addressing these items are achievable and should yield the greatest return on investment.
For perspective, I am single, live alone, and before Alzheimer's robbed me of my professional career, I performed complex IT systems integration and software security engineering. Leveraging technology that is already in the mainstream helps significantly with my ability to remain independent, defer hiring assistance with household and financial responsibilities and also to assist with daily cognitive therapy exercises. Not everyone has my background though so providing information and assistance on how to do this would be so valuable. I and I know others that would be willing to help with this.
I have secured the counsel of an integrative/ functional medicine doctor to evaluate and modify my health in a comprehensive and balanced fashion. We have been balancing nutrition, hormones, prescriptions, supplements, exercise, meditation, speech / cognitive therapy. These are non-covered costs and requiring me to fund through my retirement savings and. These testing, supply and medical and compounded prescription costs do not apply to the maximum out of pocket limits either. This care not only maximizes my quality of life but most importantly delays my need for paid assistance with activities of daily living, or other home health care or adult day care types of services. As the saying goes, an ounce of prevention is worth a pound of cure.
On a more local note, a very beneficial service I had been availing myself of through the National Gallery of Art and Smithsonians called respectively Just Us and See Me programs for people with dementia afforded me the opportunity to remain social, served as therapy for the Alzheimer's related Aphasia, and provided cognitive stimulation in a safe and supportive environment that accommodated my disability. Unfortunately, the US Government Shutdown has indefinitely terminated this most valuable service to those of us living with dementia.
Finally, I would like to advise this comprehensive panel that services for Alzheimer's provided by the DC Office of Aging (and likely many other municipalities) are not available to me as I do not meet their age restriction. An age restriction that is arbitrary. Washington DC has no support services or support groups either free or for fee available for those of us living with dementia. There are services for the care givers but none to help the disabled person to maximize their quality of life and independence. If this was available it would directly reduce the burden on care givers.
Thank you for the opportunity to make this brief statement. On November 12, 2018 I was able to attend the Open Meeting of the Committee on Care Interventions for Individuals with Dementia and Their Caregivers at the National Academy of Science. The day's discussion was most interesting as the charge of shaping the draft of the systematic key questions took place.
During the afternoon session, Mary Radnofsky, Dementia Rights Advocate, had an opportunity to speak. Her comments have prompted much reflection on my part since then. Ms. Radnofsky spoke of Human Rights issues for those with dementia and the discrimination that can accompany a diagnosis. In the context of the day's discussion she noted the importance of a systematic review that was not only focused on care interventions but on support systems and accommodations that make life worth living for each person from the time of diagnosis until end of life. For people with dementia, human rights translate into access to community, accommodations, support, health and care from early symptoms to end of life.
All too often, people with dementia experience discrimination and treatment that contravenes their human rights. They are subjected to bias, ageism, stigma and discrimination. Poor care and limited support can breach the rights of people with dementia and their care partners. They can be treated in an inhuman or degrading way, be socially isolated, experience a loss of the right to respect, loss of the right to privacy, have a diminished quality of life and seem to lose the right to freedom and the power of choice.
After almost eight years since NAPA was signed into legislation, there currently remains an unacceptable variation in the quality of formal care and support provided to people with dementia and their care partners. This variation in support and care contributes to diminished human rights, significant burden on the person with the diagnosis and as well as burden on their care partners.
While in Scotland for the ID and Dementia Summit a little over two years ago we collectively spoke of human rights issues. At the same Summit, Alzheimer's Scotland presented in detail their care practices. Though Scotland is a very small country with Universal Health Care, there often is much to be learned from smaller countries that are able to implement creative practices.
Their care paradigm includes a defined one-year post diagnostic support system. There is evidence that high quality post diagnostic support, provided over an extended period, is essential in order to equip people living with dementia, their families and care partners with the tools, connections, resources and plans they need to live as well as possible with dementia and prepare for the future.
What follows is a defined Community Based Support during the moderate to severe stages of dementia. This model recognizes that excess disability is created when people with dementia do not receive appropriate care and support. Without the right care and support, there is a gap between how people actually function and how they could potentially function. The model is designed to provide each person with the best possible support so that they are able to live in their own home as long as possible.
The End of Life Pillar introduces an Advanced Dementia Specialist Team to provide optimum care and promote the wellbeing and quality of life of both the person with advanced dementia and those closest to them. It also implements essential support to care homes and those providing day-to-day care.
The provision of essential post diagnostic support, diminishment of excess disability through appropriate care and support and the promotion of well being until end of life may ensure that human rights and quality of life are maintained despite the presence of life limiting neurodegenerative diseases.
Though a myriad of organizations and institutions across the country continue to work hard to remedy the challenges faced by individuals with dementia and their care partners, the provision of support often remains fragmented across many communities. After 8+ years at this table we can and must more rapidly translate our ongoing discussion into meaningful action across all populations. Embracing and systematically implementing successful paradigms of care begets success.
I have an article attached that I think would be of interest to you and your readers. Feel free to post if you wish.
I’m am currently residing in Massachusetts! I’m interested in this study!
Hello and thank you once again for this opportunity to provide input from AFTD. My name is Matt Sharp and I am the Program Manager at AFTD. I want to thank the Research Subcommittee for this morning's presentations and for taking on the subject of non-pharmacological interventions and maximizing the quality of life for people living with dementia. Without any approved drugs or medical treatments for FTD, behavioral and environmental interventions are critical tools for managing the symptoms of the disease. Maximizing quality of life is an integral part of AFTD's mission and I would like to share some information on a couple of relatively new resources we have for health professionals and people living with FTD.
First, we are very excited to announce that our inaugural non-pharmacological Therapies & Tools Pilot Grant was awarded to Lauren Massimo, Assistant Professor at the University of Pennsylvania School of Nursing. Dr. Massimo's will work with an experienced application developer to create a mobile app as an individualized intervention for apathy. The app will be designed to increase motivation, stimulate initiation of self-care and support the planning and carrying out of activities of daily living. Dr. Massimo will then carry out a 3-month pilot study of the app to evaluate its impact on apathy, activity levels, psychological functioning, cognition, quality of life, and caregiver burden. Apathy is one of the most disabling symptoms in FTD. It is estimated to occur in over 90% of cases of behavioral variant FTD and contributes significantly to caregiver burden. AFTD is proud to be able to support Dr. Massimo's work to develop a technological tool to address this common symptom of FTD and other types of dementia.
AFTD will be posting the RFP for this years non-pharmacological pilot grant soon and I am happy to provide more details to anyone who is interested.
AFTD has also added a 3rd type of grant to our Comstock Grant Program. For about a decade, the Comstock Program has offered short-term respite grants to FTD care-partners and travel grants to help people living with FTD and their family members cover the cost of traveling to an FTD education event. Last year we piloted a Quality of Life Grant for people living with FTD and awarded twenty $500 visa gift cards to qualified applicants. The grant is meant for people living with FTD but we accepted applications from care-partners if the person with FTD could not complete the application on their own. While we encouraged people to use the funds on costs directly related to living with FTD, such as prescription costs and other services not covered by insurance, we also realized that once the recipient received the card they could use it however they wanted. The gift card we used, allowed us to monitor where the card was used. So, even if we couldn't restrict the use of the funds we could at least know where the money went.
After the 20 grants were spent we looked at the outcomes and decided to offer more grants this year. Through the pilot grants we learned that managing the Quality of Life Grants required more administrative effort than the other types of grants in the program. We also realize there is an inherent risk that the grant money will be misused or lost, but discovered our trust in our community to use the funds responsibly was mostly warranted and the benefit of receiving 500 unrestricted dollars far outweighed the administrative and financial costs of the grant. There are still Quality of Life Grants available this and I am happy to provide more details on how to apply.
More than half of dementia cases are mixed dementias, most commonly Alzheimer's and vascular dementia. These are two different diseases with different symptoms, yet they co-occur so frequently, it is worth considering whether they share a key risk factor. Because brain exposure to ionizing radiation is known to produce cognitive deficits, Alzheimer's pathology (1-4) and vascular damage (5), it is time to take a good, hard look at the most common x-ray procedure undergone every day by millions of people from early childhood on: Dental x-rays.
Dental x-rays are considered so harmless that -- unlike every other medical x-ray procedure -- we do not even keep records of patient exposure. That is because the primary radiation field is bone and teeth, which are not considered radiosensitive, and the total area exposed is very small, considering the body's overall mass. Further, safety experts mainly focus on two radiation effects: cell death and cancer. Although dental x-rays have been associated with brain and thyroid cancers (6, 7), there has been a lack definitive proof that would change protocols. But are we overlooking possible long-term consequences of frequent dental x-rays, such as Alzheimer's and other neurodegenerative diseases? We have lots of clues -- it's a matter of how they fit together.
Although the target in dental x-rays is bones and teeth, the white areas in the image show where radiation did not penetrate, instead scattering. Scatter radiation is a known hazard for x-ray technicians (8), which is why they leave the room before pressing the button. It is also a risk for patients. Lead aprons and thyroid collars prevent some radiation exposure, but the brain has no such shielding (6-8).
Ionizing radiation damages endothelial cells (5), which line the vascular system and comprise the blood-brain barrier. A study published this month shows that "leaky" capillaries are a good indicator of cognitive decline even in the absence of Alzheimer's pathology, and may be an early biomarker for Alzheimer's disease (9). Leaky capillaries would release blood, which contains iron, into the brain's extracellular environment. This would explain the presence of tau and amyloid precursor proteins, which are both involved in iron regulation (10,11).
There also is evidence that motor-neuron diseases, such as Parkinson's, are associated with radiation exposure (4), although further research is needed. Genetic predispositions certainly play a part in neurodegenerative diseases, yet may not always induce dementia in the absence of head exposure to ionizing radiation.
For those who are heavily invested in finding pharmaceutical solutions to dementia, I am sorry to say that there may not be a magic bullet. The means of preventing dementia may be in the hands of dentists -- and of their patients, who regularly agree to routine x-rays that may have devastating consequences down the line.
- Begum N, Wang B, Mori M, Vares G. Does ionizing radiation influence Alzheimer's disease risk? J Radiat Res. 2012 Nov;53(6):815-22. Epub 2012 Aug 7.
- Kempf SJ, Azimzadeh O, Atkinson MJ, Tapio S. Long-term effects of ionising radiation on the brain: cause for concern? Radiat Environ Biophys. 2013 Mar;52(1):5-16. Epub 2012 Oct 26.
- Cherry JD, Liu B, Frost JL, Lemere CA, Williams JP, Olschowka JA, O'Banion MK. Galactic cosmic radiation leads to cognitive impairment and increased abeta plaque accumulation in a mouse model of Alzheimer's disease. PLoS One. 2012 7(12):e53275. Epub 2012 Dec 31.
- Sharma NK, Sharma R, Mathur D, Sharad S, Minhas G, Bhatia K, Anand A, Ghosh SP. Role of Ionizing Radiation in Neurodegenerative Diseases. Front Aging Neurosci. 2018 May 14;10:134. eCollection 2018.
- Baselet B, Rombouts C, Benotmane AM, Baatout S, Aerts A. Cardiovascular diseases related to ionizing radiation: The risk of low-dose exposure (Review). Int J Mol Med. 2016 Dec;38(6):1623-1641. Epub 2016 Oct 17.
- Lin MC, Lee CF, Lin CL, Wu YC, Wang HE, Chen CL, Sung FC, Kao CH. Dental diagnostic X-ray exposure and risk of benign and malignant brain tumors Ann Oncol. 2013 Jun;24(6):1675-9. Epub 2013 Feb 13.
- Hellén-Halme K, Nilsson M. The Effects on Absorbed Dose Distribution in Intraoral X-ray Imaging When Using Tube Voltagesof 60 and 70 kV for Bitewing Imaging. J Oral Maxillofac Res. 2013 Oct 1;4(3):e2 eCollection 2013.
- Holroyd J Measurement of scattered and transmitted x-rays from intra-oral and panoramic dental x-ray equipment. J Radiol Prot. 2018 Jun;38(2):793-806. Epub 2018 Apr 10.
- Nation DA, Sweeney MD1, Montagne A, Sagare AP, D'Orazio LM, Pachicano M, Sepehrband F, Nelson AR, Buennagel DP, Harrington MG, Benzinger TLS, Fagan AM, Ringman JM, Schneider LS, Morris JC8, Chui HC, Law M, Toga AW, Zlokovic BV. Blood-brain barrier breakdown is an early biomarker of human cognitive dysfunction. Nat Med. 2019 Jan 14. doi: 10.1038/s41591-018-0297-y. Epub ahead of print.
- Rao SS, Adlard PA. Untangling tau and iron: exploring the interaction between iron and tau in neurodegeneration, Front Mol Neurosci. 2018 Aug 17;11:276
- Rogers JT, Venkataramani V, Washburn C, Liu Y, Tummala V, Jiang H, Smith A, Cahill CM. A role for amyloid precursor protein translation to restore iron homeostasis and ameliorate lead (Pb) neurotoxicity. J Neurochem. 2016 Aug;138(3):479-94.
What can be done to improve dental x-ray safety?
If frequent, lifelong head exposure to ionizing radiation from dental x-rays is a risk factor in developing dementia, it is critical to review industry safety options.
There are many studies regarding dental x-ray safety. What follows is a small sample from researchers around the world to highlight some of the many issues at stake, such as the number of x-rays taken (and how fee-for-service results in more radiation exposure), film type and speed, collimator shape, tube voltage, pediatric vs. adult settings and more. Other issues that need to be taken into consideration are the fact that women's brains are more radiosensitive than male brains and children are much more radiosensitive than adults. While no one wants to lower dental health standards, clearly the risk-vs.-benefit regarding dental x-ray practices needs to be reevaluated. Once that has been accomplished, it will take extraordinary measures and leadership to make universal changes in best practices.
- Chalkley M, Listl S. First do no harm - The impact of financial incentives on dental X-rays. J Health Econ. 2018 Mar;58:1-9 Epub 2017 Dec 30.
- Hellén-Halme K, Nilsson M. The Effects on Absorbed Dose Distribution in Intraoral X-ray Imaging When Using Tube Voltagesof 60 and 70 kV for Bitewing Imaging. J Oral Maxillofac Res. 2013 Oct 1;4(3):e2. eCollection 2013.
- Holroyd J Measurement of scattered and transmitted x-rays from intra-oral and panoramic dental x-ray equipment. J Radiol Prot. 2018 Jun;38(2):793-806. Epub 2018 Apr 10.
- Anissi HD, Geibel MA. Intraoral radiology in general dental practices - a comparison of digital and film-based X-ray systems with regard to radiation protection and dose reduction. Rofo. 2014 Aug;186(8):762-7. Epub 2014 Mar 19.
- Davis AT, Safi H, Maddison SM. The reduction of dose in paediatric panoramic radiography: the impact of collimator height and programme selection. Dentomaxillofac Radiol. 2015;44(2):20140223. Epub 2014 Oct 29.
I am the co-chair of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) (http://www.aadmd.org/ntg). The NTG is an affiliate of the American Academy of Developmental Medicine and Dentistry.
Today, we would like to comment on the deficiency in reliable and available specialized dementia diagnostic and post-diagnostic services for adults with intellectual disability (including those with Down syndrome) and speak to a proposal to remediate this deficiency.
Given that adults with intellectual disability are one of the 'specific populations' recognized by the Advisory Council on Alzheimer's Research, Care, and Services in the National Plan to Address Alzheimer's Disease, and that the National Institutes for Health has noted that many
- adults with Down syndrome, an intellectual disability, are at significant risk of dementia (mainly resulting from Alzheimer's disease),
- some experience symptoms of cognitive impairment earlier in life,
- may be subject to neglect or abuse or are at risk of institutional placement,
- would benefit from early screening and assessment and access to knowledgeable diagnostic services,
- often live with older caregivers who, or are served by provider agencies that, have difficulty finding knowledgeable clinicians who can provide accurate assessments or diagnoses, as well as post-diagnostic supports, and
- knowing that many such resources are difficult to access and scarce in most non-urbanized areas and that few clinicians currently are specialists in the differential diagnosis of dementia among adults with intellectual disability,
We propose that there is a need to increase the availability of intellectual disability focused dementia assessment and diagnostic resources and post-diagnostic supports across the United States. Currently, there is a serious lack of such specialized diagnostic services across the states and there is no national register of such specialists. A remedy would be to raise the awareness of the availability of such services and increase the interest of existing (or emerging) dementia diagnostic services to also be recognized as an intellectual disability specialty provider.
We note that the report on intellectual disability and dementia1 that emanated from the 2017 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers stated that early diagnosis is essential to ensure timely interventions, such as proffering medications for symptom management, establishing advance care plans, and applying psychosocial interventions for adults with intellectual disabilities. Further, the report noted the need for increased diagnostic competency among diagnosticians, more public awareness in general, and accessible information designed to raise the "index of suspicion" for caregivers of adults with intellectual disability. The report recommended with respect to screening and diagnostics, that there be increased screening for dementia, raised public and professional awareness; and more readily available diagnostic services.
To this end, the NTG and other aging and disability organizations have proposed a legislative remedy that would increase such awareness, focus attention on available and newly recognized diagnostic services, and enhance post-diagnostic supports. Consequently, we recommend that the Older Americans Act, which is up for reauthorization this year, be amended to include provisions that would increase availability of specialized diagnostic resources and increase the provision of post-diagnostic supports for this specific population.
In the current iteration of the Older Americans Act, there are several sections that contain foundational language:
- Section 102(14) of the OAA states that the term ''disease prevention and health promotion services'' means--(J) information concerning diagnosis, prevention, treatment, and rehabilitation concerning age-related diseases and chronic disabling conditions, including osteoporosis, cardiovascular diseases, diabetes, and Alzheimer's disease and related disorders with neurological and organic brain dysfunction"; and Section (14)(L) "counseling regarding social services and followup health services based on any of the services described in subparagraphs (A) through (K)."
- Section 201(e)(3)(f)(2) of the OAA states that "It shall be the duty of the Assistant Secretary, acting through the individual designated under paragraph (1), to develop objectives, priorities, and a long-term plan for supporting State and local efforts involving education about and prevention, detection, and treatment of mental disorders, including age-related dementia, depression, and Alzheimer's disease and related neurological disorders with neurological and organic brain dysfunction."
- Section 307(a)(16)(A) of the OAA states that the State agency would require outreach efforts that will identify individuals eligible for assistance under this Act, with special emphasis on "(i) older individuals residing in rural areas; (ii) older individuals with greatest economic need (with particular attention to low-income older individuals, including low-income minority older individuals, older individuals with limited English proficiency, and older individuals residing in rural areas); (iii) older individuals with greatest social need (with particular attention to low-income older individuals, including low-income minority older individuals, older individuals with limited English proficiency, and older individuals residing in rural areas); (iv) older individuals with severe disabilities; (v) older individuals with limited English-speaking ability; and (vi) older individuals with Alzheimer's disease and related disorders with neurological and organic brain dysfunction (and the caretakers of such individuals);
- Section 307(a)(17) of the OAA states that "The [State] plan shall provide, with respect to the needs of older individuals with severe disabilities, assurances that the State will coordinate planning, identification, assessment of needs, and service for older individuals with disabilities with particular attention to individuals with severe disabilities with the State agencies with primary responsibility for individuals with disabilities, including severe disabilities, to enhance services and develop collaborative programs, where appropriate, to meet the needs of older individuals with disabilities."
Given these requirements under the statute, it is proposed to incorporate into the Older Americans Act a provision to identify and promote use of state designated intellectual disability geriatric assessment centers, specifically designated as resources for the screening, assessment, and diagnosis of Alzheimer's disease and related disorders with neurological and organic brain dysfunction.
Specifically, the legislation would enable such centers to:
- Have at minimum one or more clinical specialists experienced in screening, assessing, and diagnosing older adults with intellectual disability, including adults with Down syndrome, developmental disabilities, and other neurodevelopmental conditions who may be at risk of institutional placement, precocious aging, abuse or neglect, and who are at high risk of dementia or who are suspected of experiencing cognitive decline or other neurodegenerative mental or physical condition associated with aging.
- Offer their assessment and diagnostic services to adults with intellectual disability and with those with severe disability, suspected of or affected by cognitive impairment such as Alzheimer's disease and related disorders with neurological and organic brain dysfunction, and their primary caregivers.
- Be capable of primary screening, assessment, and diagnosis of cognitive impairment, such as Alzheimer's disease and related disorders with neurological and organic brain dysfunction, following referral from primary care or general practitioners, social care agencies, family members, community-based entities, and via self-referral.
- Liaise with and provide consultation to social care and other community-based agencies, and referral sources, on post-diagnostic supports and enable or provide follow-along post-assessment or post-diagnostic clinical assessments.
- Provide consultation on assessment, diagnosis, and post-diagnostic supports to primary care physicians, general practitioners, and other health providers (including neurologists, geriatricians, and psychiatrists) not located geographically proximate to the center, via Internet and other distance communication methodologies, such as telemedicine.
- Liaise and link to the Aging and Disability Resource Centers within the state.
To support this provision, specifically, the State [aging] agency:
- Would be tasked to identify the scope of need for such a center or centers within the State as part of its State plan requirements.
- Would be tasked to make such designations in consultation with the state developmental disabilities authority, the state's developmental disabilities planning council, the state's Aging and Disability Resource Centers, and the state entity responsible for administering or organizing the state's plan to address Alzheimer's disease and other dementias.
A proposal for legislative language has been prepared that addresses this issue and is being circulated among organizations and associations involved in disability and aging advocacy which have an interest in dementia and are contributing specificity to changes in the next iteration of the Older Americans Act.
We ask for your support, to the extent possible, for this legislative proposal and for due consideration in otherwise addressing this need in the 2019 update of the National Plan.
- Heller, T. Scott, H.M, Janicki, M.P., and Pre-Summit Workgroup on Caregiving and Intellectual/Developmental Disabilities. (2018). Caregiving, intellectual disability, and dementia: Report of the Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities. Alzheimer's & Dementia: Translational Research & Clinical Interventions, 4(4), 272-282. DOI: https://doi.org/10.1016/j.trci.2018.06.002
I am a co-chair of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) (http://www.aadmd.org/ntg). The NTG is an affiliate of the American Academy of Developmental Medicine and Dentistry (AADMD).
I am a neurologist and the chair of the Special Interest Group (SIG) on Adults with Intellectual and Developmental Disabilities within the American Academy of Neurology (AAN). The SIG was created because we recognized that there is a huge predominance of neurologic complications in this population, including epilepsy and early onset Alzheimer's disease in adults with Down syndrome. To date there are no official assessment, diagnostic, or care guidelines for these conditions and there is no standard curriculum being taught across our country in any family practice, internal medicine, neurology, psychiatry, or nursing training programs. Ironically, the only discussion on health issues relating to adults with intellectual disability is usually discussed in pediatric rotations.
Where do families and support organizations go to get diagnostic assessment and healthcare supports for those with age related decline and dementia? They go anywhere and everywhere which includes university academic centers and memory centers. We hear countless stories across the country that these centers tell them when requested to help that they do not have the expertise to help. We hear a great degree of frustration, sadness, and anger when calls for help are not answered.
We are thrilled that research is being conducted in helping to better diagnose and understand how and why Alzheimer's disease occurs in adults with Down syndrome. Maybe one day it will lead to an ability to change the trajectory of this disease, which tragically can have a horrific rapid progression leading to death in only a matter of several years. Time is not on their side for current research to help many who now are on the precipice of this disease.
The National Task Group on Intellectual Disabilities and Dementia Practices, American Academy of Developmental Medicine and Dentistry, Down Syndrome Medical Interest Group and the efforts of the Special Interest Group of Adults with Intellectual Disabilities in the American Academy of Neurology all hope to make a difference in being able to educate, train and provide further awareness of age-related decline and dementia in adults with intellectual disability. We need to start by understanding what normal age related decline is and to develop appropriate diagnostic and assessment tools which are appropriate for those individuals who may not be verbal and whose supports including aging caregivers may not be able to provide a comprehensive discussion on the nature and degree of the changes that they are noting in the one they support. We need to have Intellectual Disability and dementia Healthcare Guidelines which can then be used to help educate doctors and nurses as part of their curriculum in their training programs as well as for those practitioners who are already practicing.
All of the education and training in the world will not make a difference in improving access to quality healthcare if we can never convince and support healthcare providers to see patients who commonly present with complex developmental conditions, who may have associated challenging behaviors, who may have fragmented supports with limited detailed information about their difficulties and they may not be reimbursed fairly for the time and effort required to make a accurate and appropriate plan of care. This means fair reimbursement for their professional services especially for the many patients who may have Medicare or Medicaid as their primary healthcare insurance. There also needs to be a number of highly specialized experts in the field, including primary care as well as specialty care providers including neurology, psychiatry as well as nursing who can act as a referral center when particular questions and complications arise. Having the availability of a specialized national and state telehealth system to provide clinical expertise in intellectual disability would go far to this end.
We, through our various professional organizations, are raising the awareness of the challenges faced by adults with intellectual disability as dementia takes its toll. However, we can only do so much. A unified approach to promoting clinical acuity in this area and advocated for in the next iteration of the National Plan Update, would go far to give us the support we need and help more professional organizations to join us at the table.
Individuals with Intellectual and Developmental Disabilities have been devalued and marginalized in our society throughout history. There has been social, cultural, and civil rights changes that have led to enabling many to enjoy their lives including living longer than ever before, however, access to quality healthcare especially to aging adults remains abymsal. We all need to catch up to this growing demographic and provide the fair and necessary supports that they deserve as US citizens.
Thank you for the opportunity to address the Council. I am the mother of a 44-year-old gentleman who has Down syndrome, autism and Alzheimer's.
When we learned that my son Matt was exhibiting signs of early stage Alzheimer's disease, I didn't know what to do. I quickly learned that most of his doctors had no idea what to tell me to expect as we moved forward on this path. Within a few months, I connected with the National Task Group on Intellectual Disability and Dementia Practices and found they were discussing the need for support for families. Because I had a long personal and career history with family support, I volunteered to take the lead on this project, and in April 2016 we hosted our first online support group meeting.
The meetings have provided a safe place for families supporting an individual with an intellectual disability (primarily Down syndrome) and Alzheimer's disease. Many of our members have no one else they can discuss their concerns with. In addition, we have an educational component in the meetings as we invite professionals to present on topics that have been identified by the group members.
We have provided support to more than 20 families, many of whom are still participating. We know there is a need for additional online support groups. As a result, we are in the process of expanding the availability of the NTG's online support groups. We are actively recruiting facilitators for new groups and are teaming up with a university center on aging to undertake a study of the impact of participation in online support groups. In April, we will be presenting this project at the National Down Syndrome Society's Second Adult Summit in Detroit. Michigan. I hope some of you might attend
As noted in the Caregiving, Intellectual Disability, and Dementia: Report of the Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities report (see attached) following the NIH Caregiving Summit, the following points were made related to intellectual disability and family/caregiver support:
Dementia-related caregiving in this group poses idiosyncratic challenges and manifests special demands, as caregivers need to be more alert to subtle changes in function due to the presence of lifelong impairment and confront the need to transition from routine care--on the presence of an ID--to specialty care and adapt to stage-related changes when dementia becomes evident.
Research dedicated to understanding the course of dementia and the impact of caregiving has in large part excluded (or not actively included) people with IDDs in their samples. A position of the working group is that inclusion of people with IDD, and their caregivers into relevant research will increase the breadth and applicability of studies and produce generalizable value as well as promote full community inclusion.
The conclusion of that report echoes the frustrations that the families we know have expressed. Repeatedly we hear how important their online support group is because no one else truly understands. Here are quotes from some of those families:
#147;I have benefited from the support group, it has been helpful to hear others who are having similar experiences. I feel if I come across a situation during the month, I know I will be able to share with the group and they will understand and provide valuable information and resources."
"No other's words brought me more peace than the words from this group as only those here truly understand how it is.
"You, the support group, Mary, and many others have helped me so much since ****'s diagnosis in January. You have given me lots of information but more importantly have talked me off the ledge and reminded me to breathe. I'm sure I'll have more times like that in the future but for now I am grounded and ready to put one foot in front of the other."
In closing, I ask today that the importance of expanding family support is recognized -- especially that focused on the unique needs of individuals with intellectual disability, such as Down syndrome, and their family caregivers, and that the continuing efforts of the NTG in this regard also be recognized and included in the 2019 update of the National Alzheimer's Plan.
I appreciate the opportunity to speak with you today and to share the efforts of the NTG to support family caregivers, and ultimately people with intellectual disability (such as Down syndrome) and dementia.