Presentation on theme: "Alzheimer’s disease and Related Dementias (ADRD)"— Presentation transcript:
1Alzheimer’s disease and Related Dementias (ADRD) Todd H. Goldberg, MD, CMD, FACPWVU Charleston DivisionCharleston Area Medical CenterHanna Thurman, MSW, LGSW, MPAWV Geriatric Education CenterOriginal content developed by Mark A. Newbrough, MDAssociate ProfessorDivision of General Medicine, Geriatrics, and Palliative MedicineUniversity of VirginiaMedical Director, Blue Ridge PACEThis project is supported by a grant from the Health Resources and Services Administration (HRSA), under grant number UB4HP19050 West Virginia Geriatric Education Center for $2,000,000. The information and conclusions are those of the author and should not be construed as the official policy of, nor should be any endorsement inferred by the HRSA, DHHR, or U. S. Government.HandoutMOCACBICaregiver Resource ListGDS
2IntroductionThis program is an initiative of the West Virginia Geriatric Education Center (WVGEC), a federally funded inter-professional education program statewide for geriatrics, centered at WVU Health Sciences Center – Charleston Division.Geriatric Education Centers, funded by HRSA (Health Resources and Services Administration), provide training of inter-professional faculty, students, and practitioners on aging and geriatrics. WVGEC is a consortium of partners including WVU Health Sciences Center (three campuses), Marshall University, WV School of Osteopathic Medicine, three Rural/Area Health Education Centers and Charleston Area Medical Center. The WVGEC is also known in WV for its Health Literacy Training for Health Professionals, Geriatrics Lunchtime Learning Series and Advanced Geriatric Skills Training.
3After completion of this program participants should be able to: Recognize the signs and symptoms of ADRDDescribe the steps necessary to assess for and diagnose ADRD when it is presentDescribe the general strategies for managing ADRD in the context of other health conditionsRecognize caregiver burden and depression, and help provide resources for ADRD caregivers who demonstrate significant burden and/or depressionDescribe how to facilitate referrals to community resources and clinical trials for patients/families with ADRD.
4News item: “World's oldest woman had normal brain” Amsterdam, 9 June 2008 – A 115-year-old woman who remained mentally alert throughout her life had an essentially normal brain, with little or no evidence of Alzheimer's disease, according to a study in the August, 2008 issue of Neurobiology of Aging
5Dementia Is Not Normal Aging! National: 5.4 million in US with AD in 2012WV State: 44,000 people, with 50,000 expected by 2025WV State AD Registry6th leading cause of death in the United States5th leading cause of death in adults 65 and olderDo YOU list dementia as a cause of death on death certificates?
10Many Types of Dementia Alzheimer’s disease (AD) Lewy Body Disease (LBD)Vascular dementia (VaD)Parkinson’s disease dementia (PDD)Frontotemporal dementia (FTLD, Pick’s)Huntington’s diseaseProgressive supranuclear palsy (PSP)Cortical basal ganglionic degeneration (CBD)Infectious: Creutzfeldt-Jakob disease, HIV
11Alzheimer’s disease (AD) First described 1907 by Alois Alzheimer (German Neuropathologist) in a 52 year old womanPathological findings at autopsyΒ-amyloid plaquesNeurofibrillary tangles (Tau protein)BiomarkersBiomarkers of brain amyloid-beta (Aβ) protein deposition: low cerebrospinal fluid Aβ42 and positive PET amyloid imaging3 major biomarkers of downstream neuronal degeneration or injury are: elevated CSF tau, [both total tau and phosphorylated tau (p-tau)]; decreased 18fluorodeoxyglucose (FDG) uptake on PET in temporo–parietal cortex; and disproportionate atrophy on structural magnetic resonance imaging in medial, basal, and lateral temporal lobe, and medial parietal cortex.
12Auguste Deter (AD)Auguste Deter Born May 1850 Died April 1906 Nationality: GermanHer maiden name is unknown. She married Karl Deter in the 1880s or so and together they had one daughter. Auguste had a normal life. However, during the late 1890s, she started showing symptoms of dementia. After many years, she became completely mindless, muttering to herself. She was the first person diagnosed with Alzheimer's Disease.
14SDAT - Neuropathology Senile or neuritic or beta amyloid plaques Neurofibrillary tanglesIntracellular paired helical filaments found predominantly in hippocampus and temporal cortex. Composed of abnormally phosphorylated tau proteins.Extra-cellular lesions composed of amyloid peptides which appear to cause brain dysfunction and cell death
15DSM IV Diagnostic Criteria for AD/ Dementia of Alzheimer’s Type 331 1. Dementia: development of multiple cognitive deficits manifested by memory impairment, word finding difficulty, and at least one of the following cognitive disturbances: aphasia, apraxia, agnosia, disturbance in executive functioning2. Course characterized by gradual onset and decline3. Cognitive deficits cause significant impairment in social or occupational function and represent a significant decline from previous level of functioning4. Cognitive deficits not due to other CNS conditions, systemic conditions, substance induced conditions, delirium, or any other Axis I mental disorder (e.g. depression, schizophrenia).DSM 5 = New Terminology “NEUROCOGNITIVE DISORDER”So we defined dementia now how do we define Alzheimer’s Disease or Dementia of Alzheimer’s Type (ICD9 code ):The most commonly used clinical definition is from the DSM IV, the Diagnostic and Statistical Manual of the American Psychiatric Association, which defines primary degenerative or Alzheimer’s type dementia as follows:1. Dementia, which again is the development of multiple cognitive deficits manifested by: memory impairment (inability to learn new information and to recall previously learned information) and at least one of the following: aphasia (language disturbance), apraxia (inability to carry out motor activities despite intact motor function), agnosia (failure to recognize or identify objects despite intact sensory function), disturbance in executive functioning (i.e. planning, organizing, sequencing, abstracting. Word-finding difficulty is a common early symptom.2. Course characterized by gradual onset and continuing cognitive decline. (Though irreversibility or prognosis is not specified).3. The cognitive deficits cause significant impairment in social or occupational function and represent a significant decline from a previous level of function.The cognitive deficits are not due to other CNS, systemic or substance-induced conditions. (Inappropriately rules out mixed or vascular cases?).And the deficits do not occur exclusively during the course of delirium, though delirium can be superimposed on dementia.And the deficits are not better accounted for by another axis I psychiatric disorder (e.g. depression, schizophrenia) or by other neurological disorders or developmental disorders such as mental retardation (though Down’s victims develop dementia on top of their retardation if they live long enough).So Alzheimer’s is sort of a diagnosis of exclusion, you have to rule out every other possible neurological or psychiatric cause. So this is the current definition according to the DSMIV.
17NIA-Alzheimer’s Association’s Revised Diagnostic Guidelines for Alzheimer’s disease Several articles in Alzheimer’s & Dementia, 2011For clinical use:Alzheimer’s disease (AD)Mild cognitive impairment because of AD (MCI)For research purposes:Preclinical ADUpdated understanding of clinical-pathological correlationCurrent state of knowledge re: biomarkers
18Core Clinical Criteria for Dementia Cognitive or behavioral (neuropsychiatric) symptoms:Interfere with the ability to function at work or at usual activities; andRepresent a decline from previous levels of functioning and performing; andAre not explained by delirium or major psychiatric disorder; and
19Core Criteria (slide 2 of 3) 4. Cognitive impairment is detected and diagnosed through a combination of:history-taking from the patient and a knowledgeable informant, and(2) an objective cognitive assessment, either a “bedside” mental status examination or neuropsychological testing.Neuropsychological testing should be performed when the routine history and bedside mental status examination cannot provide a confident diagnosis.
20Core Criteria (slide 3 of 3) 5. At least two of the following domains:Impaired ability to acquire and remember new informationsymptoms include: repetitive questions or conversations, misplacing personal belongings, forgetting events or appointments, getting lost on a familiar route.Impaired reasoning and handling of complex tasks, poor judgment (Executive Functioning)symptoms include: poor understanding of safety risks, inability to manage finances, poor decision-making ability, inability to plan complex or sequential activities.
21Core Criteria: Domains Impaired visuospatial abilitiessymptoms include: inability to recognize faces or common objects or to find objects in direct view despite good acuity, inability to operate simple implements, or orient clothing to the body.Impaired language functions (speaking, reading, writing)symptoms include: difficulty thinking of common words while speaking, hesitations; speech, spelling, and writing errors.
22Core Criteria: Domains (continued) Changes in personality, behavior, or comportmentsymptoms include: uncharacteristic mood fluctuations such as agitation, impaired motivation, initiative, apathy, loss of drive, social withdrawal, decreased interest in previous activities, loss of empathy, compulsive or obsessive behaviors, socially unacceptable behaviors.
23Probable ADMeets criteria for dementia, and has the following characteristics:Insidious onset. Symptoms have a gradual onset over months to years, not sudden over hours or days; andClear-cut history of worsening of cognition by report or observation; andThe initial and most prominent cognitive deficits are evident on history and examination in one of the following categories.
24Probable AD: Amnestic Presentation Most common syndromic presentation of AD dementia.The deficits should include impairment in learning and recall of recently learned information.There should also be evidence of cognitive dysfunction in at least one other cognitive domain, as defined earlier in the text.
25Probable AD: Nonamnestic Presentations Language presentation:The most prominent deficits are in word-finding, but deficits in other cognitive domains should be present.Visuospatial presentation:The most prominent deficits are in spatial cognition, including object agnosia, impaired face recognition, simultanagnosia, and alexia. Deficits in other cognitive domains should be present.Executive dysfunction:The most prominent deficits are impaired reasoning, judgment, and problem solving. Deficits in other cognitive domains should be present.
26Do not use the dx “Probable AD” if: Substantial concomitant cerebrovascular disease, orCore features of dementia with Lewy bodies other than dementia itself; orProminent features of behavioral variant frontotemporal dementia; orProminent features of semantic variant primary progressive aphasia or nonfluent/agrammatic variant primary progressive aphasia; orEvidence for another concurrent, active neurological disease, or a non-neurological medical comorbidity or use of medication that could have a substantial effect on cognition.
27Possible AD Atypical course Etiologically mixed presentation E.g. has a sudden onset of cognitive impairment or demonstrates insufficient historical detail or objective cognitive documentation of progressive declineEtiologically mixed presentationConcomitant cerebrovascular disease, orFeatures of dementia with Lewy bodies other than the dementia itself, orEvidence for another neurological disease or a non-neurological medical comorbidity or medication use that could have a substantial effect on cognition
28LBD Lewy Body Dementia“LBD is not a rare disease. It affects an estimated 1.3 million individuals and their families in the United States. Because LBD symptoms can closely resemble other more commonly known diseases like Alzheimer’s and Parkinson’s, it is currently widely underdiagnosed. Many doctors or other medical professionals still are not familiar with LBD.”For more information visit Lewy Body Association, Inc. website
30Frontotemporal Dementias (FTD/FTLD) Several types: Pick’s disease, Primary Progressive Aphasia, Semantic dementia, PSP, CBDVisit The Association for Frontotemporal Dementias website
31Vascular Dementia (VaD) Clinical/Pathological Criteria Clinical definition of VaD:1) Dementia (decline in memory and intellectual abilities causing impaired ADL)2) Evidence of cerebrovascular disease clinically/brain imaging3) They must be reasonably temporally relatedBrain imaging: large vessel strokes, small vessel / subcortical disease, and/or leukoencephalopathy.No specific radiologic lesions. Absence of ischemia rules out VaD.Mixed dementia = AD + CVDProbable, possible, definite
32Mild Cognitive Impairment (MCI) Concern regarding a change in cognition:There should be evidence of concern about a change in cognition, in comparison with the person’s previous level.Impairment in one or more cognitive domainsDecline in episodic memory most common in MCI due to ADPreservation of independence in functional abilitiesNot dementedThese cognitive changes should be sufficiently mild that there is no evidence of a significant impairment in social or occupational functioning.
33MCI (continued)Because other domains of cognitive function may be involved, it is important to test more than memoryExecutive functions (e.g., set-shifting, reasoning, problem-solving, planning),Language (e.g., naming, fluency, expressive speech, and comprehension),Visuospatial skills,Attentional control (e.g., simple and divided attention).
34Screening for AD Lots of interest, but with pros and cons Pros: Cons: Early diagnosisPotential opportunities to participate in future trialsOpportunity to beginning planning earlierCons:Increased anxiety / depressionLabelingNot currently able to change the course of illness
35Screening for AD (continued) Therefore NOT recommended by US Preventive Services Task Force.Busy primary care practitioners need to be able to identify those patients who need more evaluation (whether pure screening, or in response to a vague or general concern)Medicare AWV includes a cognitive screen – no specific instrument required but MINI-COG suggested.
36Mini-Cog The Mini-Cog assessment instrument: Give 3 words to rememberClock-drawing test (CDT)Recall the 3 wordsCan be administered in <= 3 minutesRequires no special equipmentRelatively uninfluenced by level of education or language variations.
42Course and stages of Alzheimer’s/dementia Staging: Global Deterioration Scale//FAST Scale of Reisberg et al. (Am J Psychiat 1982;139: , Psychopharm Bull 1988;24: ):1: Normal (no cognitive decline)2: Forgetfulness (very mild cognitive decline)3: Forgetfulness (MCI; earliest clear cut deficits)4: Late confusional (mild AD/moderate cognitive decline)5: Early dementia (moderate AD/moderately severe decline)6: Middle dementia (moderate to severe AD/severe cognitive decline)7: Late dementia (severe AD/very severe cognitive decline).
43Clinical Dementia Rating Scale 0 = Normal 0.5 = Very Mild Dementia 1 = Mild Dementia 2 = Moderate Dementia 3 = Severe Dementia
44AD: Making a DiagnosisPatient with a consistent clinical presentation, with clinical evidence of cognitive impairment, what additional work up is needed?Careful history and physical exam, especially looking for evidence of focal neurological deficits, medical conditions that could impair cognitionCareful review of all medications
45AD: Making a Diagnosis (continued) Complete blood count, sedimentation rateChemistry panelThyroid functionAssess Vitamin B12 levels (better to check methylmalonic acid level to detect clinically significant deficiency)Consider CT or MRI imagingDepression screening
46Geriatric Depression Scale 15 questions, may be self-administered5 or more “positive” responses suggestive of clinically significant depressionMore severe cognitive impairment may limit effectiveness of screenIf cognitive impairment mild, and depression severe, consider treating depression before making AD diagnosis
48Managing ADRD: The Caregiver Who takes care of people with ADRD?Family / lay caregivers: Vast majority at home/communityDirect care workers: Most of in home workers and facility based careHealth professionals: Important, but frequently limited contact and role in direct, hands on careMajority of care provided by people who care the most, but who are least well trained.
49Managing ADRD: The Caregiver (slide 2 of 3) According to the Alzheimer’s Association, 2006:80% of caregivers report they frequently suffer high levels of stressNearly 50% report feelings of depressionSuch feelings of enduring stress and frustration have been frequently referred to as “caregiver burden”.High levels of caregiver burden have been shown to lead to a wide variety of negative outcomes for patients, caregivers, and others.
50Managing ADRD: The Caregiver (slide 3 of 3) Caregivers are often reluctant or unable to voice their concerns to health professionalsFeelings of obligation, guiltTaking on the “caregiver” role to the exclusion of self-preservationFrequently unaware of the toll that caregiving is takingGiven the impact of caregiver burden and burnout on patient outcomes, it is incumbent of the health professional community to screen for and monitor caregiver burden
51Screening for Caregiver Burden The Caregiver Burden Inventory (CBI)24 items, with 5 possible responses per itemNever, Rarely, Sometimes, Quite Frequently, Nearly AlwaysComposite numeric score and five subscale scoresScores of 36 or higher indicative of significant burdenMay be used as self-report or via interviewA strategy for self-report during an office visit
52Time Dependency He/she needs my help to perform many daily tasks He/she is dependent on meI have to watch him/her constantlyI have to help him/her with many basic functionsI don't have a minute’s break from his/her chores
53Development Items I feel that I am missing out on life I wish I could escape from this situationMy social life has sufferedI feel emotionally drained due to caring for him/herI expected that things would be different at this point in my life
54Physical Health Items I'm not getting enough sleep My health has sufferedCaregiving has made me physically sickI'm physically tired
55Social Relationship Items I don't get along with other family members as well as I used toMy caregiving efforts aren't appreciated by others in my familyI've had problems with my marriage (or other significant relationship)I don't get along as well as I used to with othersI feel resentful of other relatives who could but do not help
56Emotional Relationship Items I feel embarrassed over his/her behaviorI feel ashamed of him/herI resent him/herI feel uncomfortable when I have friends overI feel angry about my interactions with him/her
57Caregiver Depression 2 screening questions During the past month have you often been bothered by feeling down, depressed, or hopeless?During the past month have you often been bothered by little interest or pleasure in doing things?If concerned about significant depression, considering asking about thoughts of self-harm, or harm directed at care receiver.A delicate issue if not the provider for caregiver.
58Supporting the Caregiver Just asking about burden is helpful.Validate the caregiving experience/role.People want to know if they are doing “enough” or “what they are supposed to be doing”?Community support resourcesAlzheimer’s Association support groups
59Managing Patients with ADRD Managing the ADRD itselfManaging other Medical Problems w/ ADRDManaging common complications of ADRDDepressionDeliriumBehavioral and psychological symptomsMedication safetyTransitions of carePalliative care / End of life care and ADRD
60Managing ADRD Education, education, education Facilitate access to community resourcesLocal Alzheimer’s Association officesSenior CentersThe 36 Hour Day by Mace and Rabins (guide for families/caregivers)Cardiovascular disease risk factor reductionAvoid medications/treat illnesses that could impact cognition
61Managing ADRD: General Considerations Patients with ADRD are still peopleWork to take advantage of strengths and abilitiesStay active:Regular physical activitySocial activitySupport emotional and spiritual needsEncourage people to continue to do those things they can still do (monitor safety factors)
62Managing ADRD (continued) Medications for Alzheimer’s disease (AD):Cholinesterase inhibitorsAricept (donepezil)Exelon (rivastigmine): pills or patchesRazadyne (galantamine)NMDA inhibitorsNamenda (memantine)Mark – these drugs treat what?
63Aricept (generic = Donepezil) Approved for mild-moderate-severe ADBegin 5 mg daily for four weeksTitrate up to 10 mg daily23 mg dose available for severe dementiaCommon side effects:Upset stomach or poor appetiteSleep disturbancesSyncope/Orthostasis/ Bradycardia
64Exelon (generic = Rivastigmine) Approved for mild to moderate AD and Parkinsons DementiaPillsBegin 1.5 mg orally twice a dayTitrate up by 1.5 mg dose to target of 6 mg bidTitrate every 2 weeks to targetPatches – may have less GI side effectsBegin 4.6 mg patch, change dailyTitrate up in four weeks to 9.5 mg patch, then 13.3mgCommon side effects same, with addition of rash from patches
65Razadyne (generic = Galantamine ) Approved for mild to moderate dementiaDO NOT USE FOR MCI (Black Box Warning Increased Death)Available in short acting or long acting formsGoal daily doses are the same (16-24 mg)Begin 8 mg per day (either 4mg BID, or 8mgER once daily)4 weeks between dosage titration
66Namenda (generic = Memantine) Approved for moderate to severe ADNamenda Titration Pack: Begin 5mg daily for one week, 5 mg twice daily for one week, then 10mg in the morning and 5mg in the evening for one week, then 10mg twice dailyTarget dose is 10 mg bid but once/day may be adequate (long half life hrs!). (May need to dose adjust for renal failure).Very well tolerated. May reduce GI side effects of cholinesterase inhibitors (can start before or with).
69Managing other Medical Problems w/ ADRD Still have to take care of the diabetes, hypertension, heart disease, etc.ADRD directly impacts other aspects of careMedication compliance/adherenceNutritionSafetyConditions/medications that impact cognition deserve special considerationEspecially important to focus on prognosis and goals of care
70Managing Medical Problems (continued) Err on the side of safety:DM: hypoglycemia more dangerous than modestly elevated glucoseHTN: orthostatic hypotension and risks of falls are substantialMedications that impair food intake increase risksMeds that impair cognition to be avoidedOften necessary to compromise with once daily regimens to improve compliance
71Managing Common Complications of ADRD Risk for acute medical illness, or new chronic illness does not go away once a person becomes dementedBut, the dementia makes it harder to figure out what is going on with the patient, and harder to take care of the new problemSome problems/complications are so common, they deserve special consideration
72DepressionPeople with history of depression/affective disorder may become dementedPrevalence of older adults with depression ~ 10%People with dementia frequently become depressedPerhaps as many as 25% of patients will experience depression during their courseApathy and affective (sad or anxious) presentations may also occur that may present differently than “textbook” depression
73ADRD and Depression (continued) Treatment:Cognitive behavioral therapy limited with dementiaSSRI’s a good choice for medication, especiallyCelexa / Lexapro (citalopram / escitalopram)Zoloft (sertraline)Start low dose, and realize that will take longer to respond, watch for side effects, especially anorexiaAvoid tricyclics due to anticholinergic effectsTrazadone or mirtazipine if sleep disturbances prominent
74Delirium: DefinitionDisturbance of consciousness with reduced ability to focus, sustain, or shift attentionA change in cognition or a perceptual disturbance not better explained by a preexisting, established, or evolving dementiaDisturbance develops over a short period of time (usually hours to days) and tends to fluctuate during the course of the dayEvidence suggesting disturbance caused by the direct physiological consequences of a medical condition
75Delirium: Causes D-drug use E-electrolyte and physiologic abnormalitiesL-lack of drugs (withdrawal, e.g. Etoh)I-infectionR-reduced sensory inputI-intracranial problems (stroke, bleeding meningitis, post-ictal)U-urinary retention and fecal impactionM-myocardial problems (e.g. MI, arrhythmia, CHF)*Almost any acute illness may cause delirium*
76Delirium: Management Recognize and Evaluate (CAM/CAM-ICU) Treat any underlying cause/general medical conditionNonpharmacologic measures firstLow dose haloperidol for hypoactive deliriumHigher dose haloperidol for hyperactive deliriumSeroquel (quetiapine) the drug of choice for delirium with Lewy body disease, Parkinson disease, or EPSMonitor QTC intervalWithdraw antipsychotics as soon as possibleBenzodiazepines only for EtOH/benzo withdrawal
78Behavioral and Psychological Symptoms of Dementia (BPSD) Very common problem, ranging from “sundowning”, to anger, to oppositional behavior, to wanderingPrevalence 60-80% depending on settingIncidence over any patient’s course >80%Frequent cause of hospitalization, nursing home placement, caregiver burden (and burnout)No easy answers
80BPSD (slide 3 of 5) Management: Nonpharmacologic means first Caregiver educationSafe environmentsActivities focused on giving patients satisfaction, adapted to current capabilitiesWhen considering medications, ask:Are you treating the patient or the caregiver?
81BPSD (slide 4 of 5) Medications: Psychotic syndrome: Antipsychotics ALL antipsychotics NOT specifically approved for dementia patients and ALL carry risk of death/black box warningConsider written informed consentDepressive symptoms: consider SSRI’s as aboveAnxiety, Irritability, Agitation, AggressivenessMake sure not acting on psychotic symptomsConsider benzodiazepines or mood stabilizers, but data limitedApathy: stimulants have been tried
82BPSD (slide 5 of 5) Sleep Disturbance in Dementia: Almost universal Day/night reversal hard on caregiversOverall sleep and quality of sleep impairedTreat the patient, support the caregiverDaytime activityMelatonin 1-3mg before bedtimeTrazadone, Remeron sometimes helpfulAvoid benzo’s, z-drugs
83Palliative Care / End of Life Care and ADRD Alzheimer’s disease is a terminal diseaseLate stages (Stage VII), people become bedfast, have swallowing difficulties, lose the ability to communicate basic information and needs, have increased risk for infections and deathFocus care on keeping the PWA comfortable and supporting the family
84Palliative Care (continued) EOL Care for people with Alzheimer’s (PWA)POST FormTimely discussions with patients and familiesRecognition of decline and poor prognosisAdequate diagnosis and treatment of pain (Pain-AD)Restricted use of feeding tubesReferral to Hospice (Stage VII)POST form (WV Center for End of Life Care)
85Pain Assessment IN Advanced Dementia PAINAD (Warden, Hurley, Volicer, 2003) Items12ScoreBreathing independent of vocalizationNormalOccasional labored breathing. Short period of hyperventilation.Noisy labored breathing. Long period of hyperventilation. Cheyne-Stokes respirations.Negative vocalizationNoneOccasional moan or groan. Low level speech with a negative or disapproving qualityRepeated troubled calling out. Loud moaning or groaning. Crying.Facial expressionSmiling or inexpressiveSad. Frightened. Frown.Facial grimacing.Body languageRelaxedTense. Distressed pacing. Fidgeting.Rigid. Fists clenched. Knees pulled up. Pulling or pushing away. Striking out.ConsolabilityNo need to consoleDistracted or reassured by voice or touch.Unable to console, distract, or reassure.Total
86Feeding Tubes and ADRD No advantages with artificial feeding: No improved survivalNo improved nutritional statusNo improved functional statusNo prevention of aspirationCareful hand feeding is much more beneficial, for patient and caregiver, and safer.
87Summary approach to the diagnosis of dementia. (Morley, JAMDA Jan
90Community Resources Many valuable resources available Important for health professionals to know what resources are available to their patientsImportant for health professionals to assist patients and families/caregivers in accessing available resourcesAs Dr. Newbrough mentions, your role is critical, but you may have limited contact and role in direct, hands-on care.
91Referral Considerations Cultural considerations and personal preferencesNavigating the long-term care system is difficult and overwhelmingUse health literacy concepts when possibleLimited concepts limit resources to 3-4Plain languageTeachbackFemale with AD may prefer a female caregiver to provide personal careWillingness to seek medical attentionCertain facilities may be more equipped to deal with physical disabilities than behavior issues
92Referral Considerations (continued) Alzheimer’s Association Warning Signs and Common SymptomsWhere the individual is in the disease processAsk how the individual would like the referral facilitatedFollow-upThe earlier the better – leads to earlier accessing of resources
93Statewide Resources Alzheimer’s Association Aging & Disability Resource NetworkFAIRLighthouseMedicaid WaiverMedicaid Personal CareBlanchette Rockefeller Neurosciences Institute (maintains WV AD registry)WV Center for End-of-Life CareAdult Protective Services Senior Legal AidLong-Term Care Ombudsman ProgramCannot cover all of these resources, but will address those relevant when talking about ADRD.
94Aging & Disability Resource Network Focus is on navigating resourcesLong term care/support optionsOlder adults, caregivers, health professionals can callHelp for seniors and adults with disabilitiesResource information, access, coordinationFollow-upWalk-ins, appointment, or by phoneWebsite with resources by county WV Aging & Disability Resource NetworkStatewide toll free linehome modifications todurable medical equipment toOPTIONS COUNSELING toassistance programs for vision, hearingtransportationOlder adult, health professional, caregiver – anyone can callStory – brother calls from California about mom, neighbor has been helping, but it’s not enough…who to turn to
95Family Alzheimer’s In-Home Respite Program (FAIR) State in-home careprogram administered byCounty Aging ProviderIndividualized activitiesWritten diagnosis of ADRDRespite for caregiversUp to 16 hours/weekSliding scale feeContact the Bureau of Senior Services at (877)
96Lighthouse ProgramIn-home care for those seniors who have functional needs in their homes, but whose income or assets disqualify them for Medicaid servicesUp to 60 hours/monthAge 60 or olderPayment based on sliding scale feeAssistance needed in at least two of four areas:Personal care, mobility, nutrition and housekeepingContact the Bureau of Senior Services at (877)Lighthouse is intended as a program of last resort2/3 of time for personal care, meal prep1/3 for environmental, housekeeping and laundryNo transportationDepends on availability of staffMedical eligibility based on functional evaluation by provider agency’s RNTwo needs identified under ADLs on Lighthouse Eligibility formCaregivers trained in CPR, first aid, OSHA standards, personal care skills (bathing, grooming, feeding, toileting, transferring, positioning, ambulation) HIPAA, home safety, abuse, neglect and exploitation
97Aged and Disabled Medicaid Waiver Program In-home and community services to individuals 18 years and older who are medically and financially eligibleCase management, homemaker, transportation, RN assessment and reviewTraditional model and Personal Options modelNursing home level of care – must have at least five areas of needCurrently on Managed Enrollment ListIndividuals with AD may not qualifyContact local DHHR office, ADRC or Bureau of Senior Services Medicaid helpline atMedical eligibility based on a functional assessment by medical professional; Medical Necessity Evaluation Form completed by applicant and physicianFinancial determined by DHHR.Monthly income less than 300% current SSI level; for 2012 that is less than $2094/monthIncome or assets of spouse are not counted; however, there is a five-year look-back periodEstate recovery – see Legal FAQ Senior Legal AidCase management – service and support plan that reflects the wishes and preferences of the ADW memberHomemaker – assistance with personal hygiene, nutritional support and environmental maintenanceAssets less than $2000Resides in WVUnfortunately, for the time being this on managed enrollment.Traditional Model Level A 62 hrs/month and based on level of care individual can receive hours/monthPersonal Options – members have a monthly budget to hire caregivers and purchase services with ADLs
98Medicaid Personal Care Program In-home care services for individuals with full Medicaid benefitsMedical and financial eligibility must be metPersonal hygiene, dressing, feeding, nutrition, environmental support, health-related tasksAt least 3 areas of needContact the ADRC at or Bureau of Senior Services Medicaid helpline atAssets no greater than $2000/month and income no greater than $674/monthAny age, must reside in WVNo transportationIf Level D on Waiver, individuals can apply for Medicaid Personal Care as well
99Alzheimer’s Association 24-Hour Toll-Free HelplineCare consultationsSupport GroupsNewsletterNumerous resources for caregiver supportEducational Materials and tailored information packetsAccess to devices to monitor whereaboutsCommunity WorkshopsLunch and LearnMedic Alert + Alzheimer’s Safe Return = wanderers’ identification, support, and registration program; fees apply
100Alzheimer’s Association (continued) Support GroupsIndividuals with younger-onsetFor individuals caring for a spouseEarly stage support groupTopics range from coping with the diagnosis to family and lifestyle changesContact the Alzheimer’s Association’s 24-Hour Toll-Free Helpline
101Other Important Statewide Resources Senior Legal AidReferralsElder Law FAQState Long-Term Care OmbudsmanAdult Protective ServicesState Health Insurance Assistance Program (SHIP)Senior Legal Aid – free civil legal services and counsel to senior WV age 60 and older, with a focus on economically or socially disadvantaged, disabled, and rural seniorsThe person with AD is the client – that is who Senior Legal Aid must protect. However, the individual with AD can give permission to speak with caregiver. There are limits to this even if it is the MPOA or individual who has guardianship.State Long-Term Care Ombudsman program established by Older Americans Act – enhance quality of life, improve level of care, promote the rights of individuals in long-term care facility; not employed by long-term care facilities; Suzanne Messenger is employed by BoSS and Boss contracts with Legal Aid of WV to conduct day-to-day operation of the program via Supervisor and 9 Regional Ombudsmen
102Community Care Options Senior CentersHome HealthAdult Day CareAssisted LivingRespite ServicesIn-home or at a facilityHospiceNursing HomeAlzheimer’s Special Care UnitsContact the ADRC at or Alzheimer’s Association atHome Health – often not covered by insurance, but if individual has been recently hospitalized it may be covered; nursing, homemaking, therapy, etcAdult Day Care – designed to meet the needs of the individual; interaction in structured settingKanawha Senior Enrichment Center = alternative to home-based or nursing home care especially for those with ADAssisted living – private pay; step-up facilities ex. Chateau GroveNursing home – 24-hour nursing care, rehabilitation assistance, short period of medical monitoringContact facility directly or Hospice directly
103Palliative CareEOLC for people with dementia - WV Center for End-of-Life Care:Timely discussions with patients and familiesRecognition of decline and poor prognosisAdequate diagnosis and treatment of painRestricted use of feeding tubesReferral in a timely way to HospiceRemember the POST form
104Clinical Trials “The engine that powers medical progress” Provider Role“Recruiting and retaining trial participants is now the greatest obstacle, other than funding, to developing the next generation of Alzheimer’s treatments.” Alzheimer’s AssociationContact the Alzheimer’s Association atHelp advance knowledge of ADRD; clinical studies contribute valuable knowledge whether or not the experimental strategy works as expectedMake a contribution for current and future AD patients and familiesHope is to find a curePreclinical studies, Phases
105Clinical Trials (continued) Government Clinical Trials MatchClinicaltrials.govNIG National Institute on AgingClinical Trials and Older People publicationAlzheimer's Association TrialMatchComplete profileSpecialist contacts individual to help identify appropriate clinical trial based on eligibility and criteriaService of the National Institutes of HealthLaunched in 2008FDA Requires submission of “basic results” for certain trials Basic Search Alzheimer’s disease and West Virginia leads to 20 results – most are completed, one enrolling by invitation and one active but not recruiting; several recruiting in PAPeople feel like they get to play a more active role in their careRisks involved – side effects, new treatment may not work, inconvenience, control group
106ConclusionEven though AD is a progressive, and ultimately terminal condition, there is much that we can do:Provide access to community supports and resourcesFacilitate referrals to clinical trials
107Special Thanks to:The Health Resources and Services Administration