Shaping the Future of Dementia Care. Cheryl Miller, Phoebe Ministries Staff Development Coordinator

Transcription

1 Shaping the Future of Dementia Care Cheryl Miller, Phoebe Ministries Staff Development Coordinator

2 Objectives By the end of this session attendees will be able to: 1. List three modifiable risk factors associated with dementia 2. Identify three simple technologies that could be used to improve quality of life for individuals with dementia 3. Discuss what can be done to support a culturally driven health care team.

3 The Future of Alzheimer s Care Identify how we get our information about Alzheimer s and other dementias now and think about how we can obtain information in the future Identify risk factors associated with Alzheimer s Disease now And think about how we can modify those factors to reduce the risk Identify what research is happening now And think about the possibilities of what we can continue to learn from research Identify current clinical diagnostic criteria And think about how we can improve accuracy and time on getting an accurate diagnosis Identify how we treat Alzheimer s Disease now And think about how we can improve treatment Identify what we do well now. And think about what we can do better

4 Seven Major Challenges A lack of public awareness Difficulties and delays in diagnosing Alzheimer s disease Insufficient research funding Poor dementia care Inadequate treatments Specific challenges facing diverse communities Unprepared caregivers

5 LACK OF PUBLIC AWARENESS There is widespread and significant public misperceptions about diagnosis and clinical management.

6 What do we currently know about the basics of dementia and Alzheimer s disease Where are we getting our information? Would you be able to detect early signs of dementia? What if you were 80 and caring for your wife. Where would you get the information?

7 He is just getting old. Right? He hasn't had an accident yet 63% of the caregivers said the delay in Alzheimer's diagnosis was partly due to the fact that they thought their loved one's symptoms were just a part of getting older

8 Lack of Public Awareness Lack of knowledge and widespread misunderstanding about Alzheimer s Lack of knowledge about other types of dementia Significant stigma and negative experiences that affect relationships Poor understanding of scope of the disease

9 Addressing the Lack of Public Awareness The National Alzheimer s plan should: Launch a nationwide Alzheimer s awareness campaign designed to increase awareness of the disease Celebrity is a powerful platform Promote early detection and diagnosis Promote available services Promote brain health and risk reduction

10 DELAY IN DIAGNOSIS

11 Confusion with time or place Trouble understanding visual images and spatial relationships New problems with words in speaking and writing Challenges in planning or solving problems Withdrawal from social activities Memory loss that disrupts daily life Changes in mood and personality Difficulty completing familiar tasks at home, at work or at leisure Decreased or poor judgment Misplacing things and losing the ability to retrace steps

12 Prognosis years prior to Diagnosis Changes in the brain occurring Diagnosis Symptomatic Meet clinical criteria for diagnosis years post diagnosis Progression continues When symptoms are noticed.. It may mean that they are already approx. halfway through the disease process!!

13 Diagnosis takes longer than physicians allow for average visit. Lack of meaningful dialog between physician and those seeking assistance Family, spouse and individual with dementia Lack of training in detection of the disease Reluctant to give diagnosis without invasive tests to rule out other causes

14 Even with a diagnosis Getting a diagnosis is just part of the challenge Individuals are not informed about what they can expect as the disease progresses Many are left to figure it out on their own How many stages are there What can we expect in each stage How long will each stage last Why does their personality change Why do they argue with me Why are they reluctant to bathe.. take medications eat.

15 To overcome difficulties with diagnosis The National Alzheimer s Plan should: Encourage health care providers to improve the detection and diagnosis of Alzheimer's Pair each diagnosis with immediate, meaningful care planning and recording of the diagnosis in the medical record Comprehensive and accessible electronic medical records for professionals to be able to work with individuals with dementia and their families. Dementia Consultant available through primary care physicians

16 Identify Alzheimer's BEFORE symptoms Identify those most at risk and PREVENT the diagnosis of Alzheimer s disease

17 Current Diagnostic Tools Medical History Symptoms Imaging Technology that can be applied to determine changes in: Structure Function Pathology

18 Diagnostic tools in the future Advanced imaging and biomarkers Initiating therapy early in the disease, before clinical signs emerge As disease-modifying therapies become available, initiating therapy early in the disease, before clinical signs emerge, will be critical, so research on new strategies for earlier diagnosis is among the most active areas in Alzheimer's science. Genetic risk profiling Cerebrospinal fluid biomarkers Advanced brain imaging: techniques that will allow clinicians to detect and monitor genetic, metabolic, vascular and cellular changes related to Alzheimer's disease.

19 INSUFFICIENT RESEARCH FUNDING

20 Insufficient Research Funding Developing new treatments is a lengthy, expensive and uncertain process Many Alzheimer s drug candidates that were thought to be promising failed during clinical trials Alzheimer s treatment (drugs) can take years to develop

21 Biomarkers Biomarkers Experts believe that biomarkers offer one of the most promising paths. A biomarker is a substance, measurement or indicator of a biological state Biomarkers may exist before clinical symptoms arise A1C / diabetes

22 Amyloid beta imaging detected in CSF and PET amyloid imaging 2. Neuro-degeneration detected by rise of CSF tau species and synaptic dysfunction, measured via FDG-PET 3. Brain atrophy and neuron loss measured with MRI (most notably in hippocampus, caudate nucleus, and medial temporal lobe) Changes 1-3 are indicated by biomarkers that can be observed prior to a dementia diagnosis. 4. Memory loss measured by cognitive assessment 5. General cognitive decline measured by cognitive assessment Items 4-5 are the classic indicators of dementia diagnosis

23 What do we know now.

24 Alzheimer s Disease Alzheimer's disease is a progressive, degenerative disorder that attacks the brain's nerve cells, or neurons, resulting in loss of memory, thinking and language skills, and behavioral changes. Alzheimer's disease is the most common cause of dementia, or loss of intellectual function, among people aged 65 and older. Alzheimer s is not reversible Two types of abnormal lesions clog the brains of individuals with Alzheimer's disease: Beta-amyloid plaques sticky clumps of protein fragments that form outside and around neurons Neurofibrillary tangles insoluble twisted fibers composed largely of the protein tau that build up inside nerve cells.

25 The real work of your brain goes on in individual cells. An adult brain contains about 100 billion nerve cells, or neurons, with branches that connect at more than 100 trillion points. Scientists call this dense, branching network a "neuron forest. Signals traveling through the neuron forest form the basis of memories, thoughts and feelings. Neurons are the chief type of cell destroyed by Alzheimer s Disease

26 Scientists can also see the terrible effects of Alzheimer's disease when they look at brain tissue under the microscope: Alzheimer's tissue has many fewer nerve cells and synapses than a healthy brain. Plaques, abnormal clusters of protein fragments, build up between nerve cells. Dead and dying nerve cells contain tangles, which are made up of twisted strands of another protein. Scientists are not absolutely sure what causes cell death and tissue loss in the Alzheimer's brain, but plaques and tangles are prime suspects.

27 Signals that form memories and thoughts move through an individual nerve cell as a tiny electrical charge. Nerve cells connect to one another at synapses. When a charge reaches a synapse, it may trigger release of tiny bursts of chemicals called neurotransmitters. The neurotransmitters travel across the synapse, carrying signals to other cells. Scientists have identified dozens of neurotransmitters. Alzheimer's disease disrupts both the way electrical charges travel within cells and the activity of neurotransmitters. Neuron gems

28 Expand Research Develop effective prevention and treatment modalities. Prioritize and accelerate the pace of scientific research aimed at preventing and treating Alzheimer s disease and other dementias. Accelerate efforts to identify early and presymptomatic stages Identify and characterize biomarkers and targets for intervention. For every $100 that the National Institutes of Health (NIH) spends on Alzheimer s research, Medicare and Medicaid spend $26,500 caring for those with the disease. Congress must continue its commitment to the fight against Alzheimer s by increasing funding for Alzheimer s research.

29 For every $100 that the National Institutes of Health (NIH) spends on Alzheimer s research, Medicare and Medicaid spend $26,500 caring for those with the disease.

30 Hope on the horizon Testing saliva for earlier detection Using a form of protein analysis called liquid chromatography researchers analyzed saliva samples to determine which substances were predominant in the saliva of Alzheimer s patients. Sniff Tests Scientists have been finding increasing evidence that the sense of smell declines sharply in the early stages of Alzheimer's, and now a new study confirms that administering a simple 'sniff test' can enhance the accuracy of diagnosing this dreaded disease. Sampling cerebrospinal fluid Samples may contain a key biomarker of Alzheimer's. When the brain experiences injury or toxicity, certain proteins are released into the cerebrospinal fluid. One such protein, has turned up significantly higher in the CSF of Alzheimer's patients, suggesting it may be a powerful marker for diagnosis Imaging Inflammation Pan scan technology; improvements made to technology to track inflammation, whose role in Alzheimer's is still being studied.

31 POOR DEMENTIA CARE

32 Poor Dementia Care Communication barriers with health care providers Lack of knowledgeable personnel equipped to meet the unique needs posed by Alzheimer's and other dementia results in poor quality of care. Worse in rural areas where services are not readily available.

33 To overcome poor dementia care The National Alzheimer s plan should: Define the elements of quality dementia care. Train all health care workers and caregivers on the elements of quality dementia care to ensure an adequate supply of culturally-competent professionals with appropriate skills, ranging from direct care workers to community health and social workers, primary care providers and specialists. Determine the best indicators to measure whether this care is being delivered. Person centered quality should be measured accurately and inter-operably across all settings of care, coupled with quality improvement tools. Embed these measures throughout the health care system to drive better practice, from point of diagnosis onward in settings including doctor s offices, hospitals, peoples homes and nursing homes. Provide smooth transitions between care settings Dementia capable health care and long term support services

34 Emphasis should be placed on improving rates of diagnosis, reducing preventable hospitalizations and encouraging greater care coordination. Having a care manager to assist in accessing services that would be helpful, similar to what occurs for individuals with other chronic medical conditions. Care should address the complex care needs that persons with AD/ADRD have due to the physical, cognitive, emotional and behavioral symptoms of the disease. Nurse/Doctor on Demand / Telemedicine opportunities Memory Clinics

35 INADEQUATE TREATMENT One research report estimates that delaying onset of Alzheimer s for five years would result in a 41 percent lower prevalence and a 40 percent lower cost of Alzheimer s treatment in 2050

36 Inadequate Treatment Effectiveness of available drugs varies across the population None of the treatments today alter the underlying course of this terminal disease

37 Hope for the future Treatment New drugs in development are aiming at modifying the disease process by impacting one or more of the many brain changes that Alzheimer's causes. May involve a cocktail of medication aimed at several targets Recruiting the immune system Developing medications aimed in almost every point of the amyloid processing Medications aimed at preventing the formation of plaque; by carrying the excess amyloid away from the brain Medications aimed at lowering beta-amyloid levels A vaccine that stimulates the body's immune system to attack an abnormal form of tau protein that destabilizes the structure of neurons Aimed at stopping the progression of Alzheimer s disease

38 Aim at reducing the inflammation in the brain Anti-diabetes drug trials to decrease inflammation and increase blood flow to the brain Nasal insulin Use of vascular drugs Lifestyle changes Hormone therapy Medications that can block the depletion of acetylcholine levels Drugs that delay or prevent symptoms in people with genetic mutations

39 To overcome inadequate treatment The National Alzheimer s plan should recognize Alzheimer s as an unmet medical need Sustain investment in research and drug trials Correct barriers that discourage the aggressive pursuit of preventive and other pre-symptomatic treatments. Brimonidine/glaucoma Statins to treat high cholesterol

40 Specific challenges facing diverse communities

41 Although whites make up the great majority of the 5.4 million people with Alzheimer s disease, research shows that Hispanics an African Americans are at higher Risk

42 Specific challenges facing diverse communities Given the disproportionate impact of Alzheimer s on ethnic and minority populations, efforts must be implemented to eliminate disparities in these communities Language barriers Difficulty accessing resources and services Prevalence of cognitive impairment per 1000 persons

43 To overcome the specific challenges facing diverse communities The National Alzheimer s plan should: Ensure that every relevant Federal effort to recognizes the tremendous challenges that Alzheimer s and other dementias pose to diverse communities Nationwide partnership aimed at increasing Alzheimer s disease awareness to at risk populations across the country. Incorporate specific objectives, strategies and actions within these efforts to address them Develop evidence based public messages to promote healthy aging and brain health, while ensuring messages are culturally/ethically appropriate and designed to reach populations with limited English. Disseminate evidence-based educational materials for the public. Include organizations such as tribal centers, community and senior centers, faith based organizations, hospitals, nursing homes, YMCA s and others.

44 UNPREPARED CAREGIVERS

45 Unprepared Caregivers Caregivers need critical support to provide in home care Services are unaffordable Education is often on your own Emotional and physical burden of caregiving is more than expected

46 Inadequate Preparation for Caregivers Many families that receive a diagnosis and leave the doctors office without adequate preparation Unanswered questions How to provide care What services are available How the disease is expected to progress How to respond to unwanted behaviors

47 To support unprepared caregivers The National Alzheimer s plan should widely deploy Alzheimer's caregiver support services that are culturally sensitive to diverse audiences. Integrate elements from the best evidence-based caregiver interventions Caregiver consultations to identify the needs in each individual situation. Teaching and training activities: Defined under CMS A unique person centered plan directed at teaching the family or caregiver how to manage behavioral disturbances.

48 What else should caregivers expect and need? Respite care Adult day care Community home services Education on all aspects of the disease Expectation to get information from primary physician Insurance coverage for health care assistance in the home

49 To overcome challenges of unprepared caregivers The National Alzheimer s plan call for expanding adult day health services for those with Alzheimer s Provide services for home health care for the purpose of preserving the abilities and independence of persons with dementia.

50

51 6 technological innovations for those with dementia 1. Reminder messages: recorded messages Recorded messages set to go off at specific times 2. Clocks: designed specifically for those with Alzheimer s 3. Medication management: high tech automated pill dispenser which beep and open when it is time to take the medication. 4. GPS/Tracking devices Worn or attached to let a caregiver know if there loved one has left a certain area. Ensure safety and speed in a safe recovery 5. Picture phones For those who cannot remember phone numbers Will allow them to see who is calling 6. Electrical Use Monitoring Monitors use of electrical appliances / can be turned off remotely

52 MOUNTING COSTS

53 Mounting costs The costs to treat and care for Alzheimer s can be tremendously high and unaffordable over time and even more difficult to bear when encountering barriers to qualifying for insurance or government support.

54 Health care cost to care for people with Alzheimer s disease 2016 Health care costs to care for people with Alzheimer s disease 2050 $ 236,000,000,000 (236 billion) $1,000,000,000,000 (1 trillion) ~ 5 fold increase in Medicare and Medicaid and ~5 fold increase in out of pocket expenses

55 To overcome mounting costs The National Alzheimer s plan should, in addition to cost reductions achieved through the above recommendations. Address a major driver of costs to the federal and to state governments, as well as to American families by: equipping families to keep persons with dementia at home longer through access to custodial care services without having to reduce their savings to the point of becoming Medicaid eligible

56 MIND