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Todd H. Goldberg, MD, CMD, FACP WVU Charleston Division Charleston Area Medical Center Hanna Thurman, MSW, LGSW, MPA WV Geriatric Education Center Original.

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Presentation on theme: "Todd H. Goldberg, MD, CMD, FACP WVU Charleston Division Charleston Area Medical Center Hanna Thurman, MSW, LGSW, MPA WV Geriatric Education Center Original."— Presentation transcript:

1 Todd H. Goldberg, MD, CMD, FACP WVU Charleston Division Charleston Area Medical Center Hanna Thurman, MSW, LGSW, MPA WV Geriatric Education Center Original content developed by Mark A. Newbrough, MD Associate Professor Division of General Medicine, Geriatrics, and Palliative Medicine University of Virginia Medical Director, Blue Ridge PACE This 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. 1

2 Introduction This 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. 2

3 After completion of this program participants should be able to: Recognize the signs and symptoms of ADRD Describe the steps necessary to assess for and diagnose ADRD when it is present Describe the general strategies for managing ADRD in the context of other health conditions Recognize caregiver burden and depression, and help provide resources for ADRD caregivers who demonstrate significant burden and/or depression Describe how to facilitate referrals to community resources and clinical trials for patients/families with ADRD. 3

4 News 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 4

5 Dementia Is Not Normal Aging! National: 5.4 million in US with AD in 2012 WV State: 44,000 people, with 50,000 expected by 2025 WV State AD Registry 6 th leading cause of death in the United States 5 th leading cause of death in adults 65 and older Do YOU list dementia as a cause of death on death certificates? 5

6 WV AD Registry – Have you seen it? 6

7 WV AD Registry – Have you seen it? (continued) 7

8 Spectrum of Cognitive Impairment 8

9 9

10 Many 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 disease Progressive supranuclear palsy (PSP) Cortical basal ganglionic degeneration (CBD) Infectious: Creutzfeldt-Jakob disease, HIV

11 Alzheimer’s disease (AD) First described 1907 by Alois Alzheimer (German Neuropathologist) in a 52 year old woman Pathological findings at autopsy Β-amyloid plaques Neurofibrillary tangles (Tau protein) Biomarkers Biomarkers of brain amyloid-beta (Aβ) protein deposition: low cerebrospinal fluid Aβ 42 and positive PET amyloid imaging 3 major biomarkers of downstream neuronal degeneration or injury are: elevated CSF tau, [both total tau and phosphorylated tau (p- tau)]; decreased 18 fluorodeoxyglucose (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. 11

12 Auguste Deter (AD) Auguste Deter Born May 1850 Died April 1906 Nationality: German Her 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. 12

13 Dr. Alois Alzheimer ( ) 13

14 SDAT - Neuropathology Senile or neuritic or beta amyloid plaques Extra-cellular lesions composed of amyloid peptides which appear to cause brain dysfunction and cell death Neurofibrillary tangles Intracellular paired helical filaments found predominantly in hippocampus and temporal cortex. Composed of abnormally phosphorylated tau proteins. 14

15 DSM IV Diagnostic Criteria for AD/ Dementia of Alzheimer’s Type 331.0/ 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 functioning 2. Course characterized by gradual onset and decline 3. Cognitive deficits cause significant impairment in social or occupational function and represent a significant decline from previous level of functioning 4. 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”

16 DSM

17 NIA-Alzheimer’s Association’s Revised Diagnostic Guidelines for Alzheimer’s disease Several articles in Alzheimer’s & Dementia, 2011 For clinical use: Alzheimer’s disease (AD) Mild cognitive impairment because of AD (MCI) For research purposes: Preclinical AD Updated understanding of clinical-pathological correlation Current state of knowledge re: biomarkers 17

18 Core Clinical Criteria for Dementia Cognitive or behavioral (neuropsychiatric) symptoms : 1. Interfere with the ability to function at work or at usual activities; and 2. Represent a decline from previous levels of functioning and performing; and 3. Are not explained by delirium or major psychiatric disorder; and 18

19 Core Criteria (slide 2 of 3) 4.Cognitive impairment is detected and diagnosed through a combination of: (1) 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. 19

20 Core Criteria (slide 3 of 3) 5. At least two of the following domains: Impaired ability to acquire and remember new information symptoms 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. 20

21 Core Criteria: Domains Impaired visuospatial abilities symptoms 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. 21

22 Core Criteria: Domains (continued) Changes in personality, behavior, or comportment symptoms 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. 22

23 Probable AD Meets 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; and Clear-cut history of worsening of cognition by report or observation; and The initial and most prominent cognitive deficits are evident on history and examination in one of the following categories. 23

24 Probable 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. 24

25 Probable 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. 25

26 Do not use the dx “Probable AD” if: Substantial concomitant cerebrovascular disease, or Core features of dementia with Lewy bodies other than dementia itself; or Prominent features of behavioral variant frontotemporal dementia; or Prominent features of semantic variant primary progressive aphasia or nonfluent/agrammatic variant primary progressive aphasia; or Evidence for another concurrent, active neurological disease, or a non-neurological medical comorbidity or use of medication that could have a substantial effect on cognition. 26

27 Possible AD Atypical course E.g. has a sudden onset of cognitive impairment or demonstrates insufficient historical detail or objective cognitive documentation of progressive decline Etiologically mixed presentation Concomitant cerebrovascular disease, or Features of dementia with Lewy bodies other than the dementia itself, or Evidence for another neurological disease or a non- neurological medical comorbidity or medication use that could have a substantial effect on cognition 27

28 LBD 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. websiteLewy Body Association, Inc. 28

29 Lewy bodies 29

30 Frontotemporal Dementias (FTD/FTLD) Several types: Pick’s disease, Primary Progressive Aphasia, Semantic dementia, PSP, CBD Visit The Association for Frontotemporal Dementias websiteThe Association for Frontotemporal Dementias website 30

31 Vascular 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 imaging 3) They must be reasonably temporally related Brain imaging: large vessel strokes, small vessel / subcortical disease, and/or leukoencephalopathy. No specific radiologic lesions. Absence of ischemia rules out VaD. Mixed dementia = AD + CVD Probable, possible, definite

32 Mild 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 domains Decline in episodic memory most common in MCI due to AD Preservation of independence in functional abilities Not demented These cognitive changes should be sufficiently mild that there is no evidence of a significant impairment in social or occupational functioning. 32

33 MCI (continued) Because other domains of cognitive function may be involved, it is important to test more than memory Executive 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). 33

34 Screening for AD Lots of interest, but with pros and cons Pros: Early diagnosis Potential opportunities to participate in future trials Opportunity to beginning planning earlier Cons: Increased anxiety / depression Labeling Not currently able to change the course of illness 34

35 Screening 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. 35

36 Mini-Cog The Mini-Cog assessment instrument: Give 3 words to remember Clock-drawing test (CDT) Recall the 3 words Can be administered in <= 3 minutes Requires no special equipment Relatively uninfluenced by level of education or language variations. 36

37 Mini-Cog Test 37

38 Folstein Mini-Mental State Exam 30 point scale Originally published 1975, widely used, and sensitive to changes in patient’s ability (i.e. lower scores correlate well with worsening cognition) Copyright issues have created confusion about this test, especially for researchers Consider Montreal Cognitive Assessment Test (MOCA), St. Louis University Memory Screen (SLUMS) (free and in public domain) 38

39 Folstein Mini-Mental State Exam (continued) 39

40 Montreal Cognitive Assessment (MOCA) 40

41 VAMC SLUMS Examination 41

42 Course 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). 42

43 Clinical Dementia Rating Scale 0 = Normal 0.5 = Very Mild Dementia 1 = Mild Dementia 2 = Moderate Dementia 3 = Severe Dementia 43

44 AD: Making a Diagnosis Patient 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 cognition Careful review of all medications 44

45 AD: Making a Diagnosis (continued) Complete blood count, sedimentation rate Chemistry panel Thyroid function Assess Vitamin B12 levels (better to check methylmalonic acid level to detect clinically significant deficiency) Consider CT or MRI imaging Depression screening 45

46 Geriatric Depression Scale 15 questions, may be self-administered 5 or more “positive” responses suggestive of clinically significant depression More severe cognitive impairment may limit effectiveness of screen If cognitive impairment mild, and depression severe, consider treating depression before making AD diagnosis 46

47 Geriatric Depression Scale (continued) 47

48 Managing ADRD: The Caregiver Who takes care of people with ADRD? Family / lay caregivers: Vast majority at home/community Direct care workers: Most of in home workers and facility based care Health professionals: Important, but frequently limited contact and role in direct, hands on care Majority of care provided by people who care the most, but who are least well trained. 48

49 Managing ADRD: The Caregiver (slide 2 of 3) According to the Alzheimer’s Association, 2006: 80% of caregivers report they frequently suffer high levels of stress Nearly 50% report feelings of depression Such 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. 49

50 Managing ADRD: The Caregiver (slide 3 of 3) Caregivers are often reluctant or unable to voice their concerns to health professionals Feelings of obligation, guilt Taking on the “caregiver” role to the exclusion of self- preservation Frequently unaware of the toll that caregiving is taking Given 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 50

51 Screening for Caregiver Burden The Caregiver Burden Inventory (CBI) 24 items, with 5 possible responses per item Never, Rarely, Sometimes, Quite Frequently, Nearly Always Composite numeric score and five subscale scores Scores of 36 or higher indicative of significant burden May be used as self-report or via interview A strategy for self-report during an office visit 51

52 Time Dependency He/she needs my help to perform many daily tasks He/she is dependent on me I have to watch him/her constantly I have to help him/her with many basic functions I don't have a minute’s break from his/her chores 52

53 Development Items I feel that I am missing out on life I wish I could escape from this situation My social life has suffered I feel emotionally drained due to caring for him/her I expected that things would be different at this point in my life 53

54 Physical Health Items I'm not getting enough sleep My health has suffered Caregiving has made me physically sick I'm physically tired 54

55 Social Relationship Items I don't get along with other family members as well as I used to My caregiving efforts aren't appreciated by others in my family I've had problems with my marriage (or other significant relationship) I don't get along as well as I used to with others I feel resentful of other relatives who could but do not help 55

56 Emotional Relationship Items I feel embarrassed over his/her behavior I feel ashamed of him/her I resent him/her I feel uncomfortable when I have friends over I feel angry about my interactions with him/her 56

57 Caregiver 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. 57

58 Supporting 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 resources Alzheimer’s Association support groups 58

59 Managing Patients with ADRD Managing the ADRD itself Managing other Medical Problems w/ ADRD Managing common complications of ADRD Depression Delirium Behavioral and psychological symptoms Medication safety Transitions of care Palliative care / End of life care and ADRD 59

60 Managing ADRD Education, education, education Facilitate access to community resources Local Alzheimer’s Association offices Senior Centers The 36 Hour Day by Mace and Rabins (guide for families/caregivers) Cardiovascular disease risk factor reduction Avoid medications/treat illnesses that could impact cognition 60

61 Managing ADRD: General Considerations Patients with ADRD are still people Work to take advantage of strengths and abilities Stay active: Regular physical activity Social activity Support emotional and spiritual needs Encourage people to continue to do those things they can still do (monitor safety factors) 61

62 Managing ADRD (continued) Medications for Alzheimer’s disease (AD): Cholinesterase inhibitors Aricept (donepezil) Exelon (rivastigmine): pills or patches Razadyne (galantamine) NMDA inhibitors Namenda (memantine) 62

63 Aricept (generic = Donepezil) Approved for mild-moderate-severe AD Begin 5 mg daily for four weeks Titrate up to 10 mg daily 23 mg dose available for severe dementia Common side effects: Upset stomach or poor appetite Sleep disturbances Syncope/Orthostasis/ Bradycardia 63

64 Exelon (generic = Rivastigmine) Approved for mild to moderate AD and Parkinsons Dementia Pills Begin 1.5 mg orally twice a day Titrate up by 1.5 mg dose to target of 6 mg bid Titrate every 2 weeks to target Patches – may have less GI side effects Begin 4.6 mg patch, change daily Titrate up in four weeks to 9.5 mg patch, then 13.3mg Common side effects same, with addition of rash from patches 64

65 Razadyne (generic = Galantamine ) Approved for mild to moderate dementia DO NOT USE FOR MCI (Black Box Warning Increased Death) Available in short acting or long acting forms Goal 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 65

66 Namenda (generic = Memantine) Approved for moderate to severe AD Namenda 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 daily Target 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). 66

67 Memantine Studies

68 68

69 Managing other Medical Problems w/ ADRD Still have to take care of the diabetes, hypertension, heart disease, etc. ADRD directly impacts other aspects of care Medication compliance/adherence Nutrition Safety Conditions/medications that impact cognition deserve special consideration Especially important to focus on prognosis and goals of care 69

70 Managing Medical Problems (continued) Err on the side of safety: DM: hypoglycemia more dangerous than modestly elevated glucose HTN: orthostatic hypotension and risks of falls are substantial Medications that impair food intake increase risks Meds that impair cognition to be avoided Often necessary to compromise with once daily regimens to improve compliance 70

71 Managing Common Complications of ADRD Risk for acute medical illness, or new chronic illness does not go away once a person becomes demented But, the dementia makes it harder to figure out what is going on with the patient, and harder to take care of the new problem Some problems/complications are so common, they deserve special consideration 71

72 Depression People with history of depression/affective disorder may become demented Prevalence of older adults with depression ~ 10% People with dementia frequently become depressed Perhaps as many as 25% of patients will experience depression during their course Apathy and affective (sad or anxious) presentations may also occur that may present differently than “textbook” depression 72

73 ADRD and Depression (continued) Treatment: Cognitive behavioral therapy limited with dementia SSRI’s a good choice for medication, especially Celexa / Lexapro (citalopram / escitalopram) Zoloft (sertraline) Start low dose, and realize that will take longer to respond, watch for side effects, especially anorexia Avoid tricyclics due to anticholinergic effects Trazadone or mirtazipine if sleep disturbances prominent 73

74 Delirium: Definition Disturbance of consciousness with reduced ability to focus, sustain, or shift attention A change in cognition or a perceptual disturbance not better explained by a preexisting, established, or evolving dementia Disturbance develops over a short period of time (usually hours to days) and tends to fluctuate during the course of the day Evidence suggesting disturbance caused by the direct physiological consequences of a medical condition 74

75 Delirium: Causes D-drug use E-electrolyte and physiologic abnormalities L-lack of drugs (withdrawal, e.g. Etoh) I-infection R-reduced sensory input I-intracranial problems (stroke, bleeding meningitis, post- ictal) U-urinary retention and fecal impaction M-myocardial problems (e.g. MI, arrhythmia, CHF) *Almost any acute illness may cause delirium* 75

76 Delirium: Management Recognize and Evaluate (CAM/CAM-ICU) Treat any underlying cause/general medical condition Nonpharmacologic measures first Low dose haloperidol for hypoactive delirium Higher dose haloperidol for hyperactive delirium Seroquel (quetiapine) the drug of choice for delirium with Lewy body disease, Parkinson disease, or EPS Monitor QTC interval Withdraw antipsychotics as soon as possible Benzodiazepines only for EtOH/benzo withdrawal 76

77 Differential Diagnosis of Cognitive Impairment (Acute = Delirium, Chronic = Dementia) Depression (pseudodementia), other psychiatric disorders, delirium Medication/drug/alcohol/chemical toxicity Metabolic/Endocrine Azotemia/Renal failure/dehydration/hyponatremia/acid-base Hypoglycemia/hyperglycemia Hepatic insufficiency Hypothyroidism/hyperthyroidism Hypercalcemia Adrenal/pituitary insuff./Cushing’s Nutritional deficiencies/B12/folate/niacin Infection/fever Cardiopulmonary/vascular/MI/CHF/PE/COPD/CVA Brain trauma/subdural/NPH/concussion/hemorrhage/infection/tumor Pain/surgical abdomen/fecal/urinary retention Hospitalization/anesthesia/sensory deprivation/blindness/deafness Heme Onc/Anemia/CA/paraneoplastic syndromes, “CHEMO BRAIN” “ICU BRAIN” 77

78 Behavioral and Psychological Symptoms of Dementia (BPSD) Very common problem, ranging from “sundowning”, to anger, to oppositional behavior, to wandering Prevalence 60-80% depending on setting Incidence over any patient’s course >80% Frequent cause of hospitalization, nursing home placement, caregiver burden (and burnout) No easy answers 78

79 BPSD (slide 2 of 5) Psychotic syndromes Hallucinations Delusions Affective syndrome Depression, Anxiety, Irritability, Agitation Behavioral Syndrome Euphoria, Disinhibition, Apathy, Aberrant Motor behaviors Sleep disturbances 79

80 BPSD (slide 3 of 5) Management: Nonpharmacologic means first Caregiver education Safe environments Activities focused on giving patients satisfaction, adapted to current capabilities When considering medications, ask: Are you treating the patient or the caregiver? 80

81 BPSD (slide 4 of 5) Medications: Psychotic syndrome: Antipsychotics ALL antipsychotics NOT specifically approved for dementia patients and ALL carry  risk of death/black box warning Consider written informed consent Depressive symptoms: consider SSRI’s as above Anxiety, Irritability, Agitation, Aggressiveness Make sure not acting on psychotic symptoms Consider benzodiazepines or mood stabilizers, but data limited Apathy: stimulants have been tried 81

82 BPSD (slide 5 of 5) Sleep Disturbance in Dementia: Almost universal Day/night reversal hard on caregivers Overall sleep and quality of sleep impaired Treat the patient, support the caregiver Daytime activity Melatonin 1-3mg before bedtime Trazadone, Remeron sometimes helpful Avoid benzo’s, z-drugs 82

83 Palliative Care / End of Life Care and ADRD Alzheimer’s disease is a terminal disease Late stages (Stage VII), people become bedfast, have swallowing difficulties, lose the ability to communicate basic information and needs, have increased risk for infections and death Focus care on keeping the PWA comfortable and supporting the family 83

84 Palliative Care (continued) EOL Care for people with Alzheimer’s (PWA) POST Form Timely discussions with patients and families Recognition of decline and poor prognosis Adequate diagnosis and treatment of pain (Pain-AD) Restricted use of feeding tubes Referral to Hospice (Stage VII) POST form (WV Center for End of Life Care) 84

85 Pain Assessment IN Advanced Dementia PAINAD (Warden, Hurley, Volicer, 2003) Items012Score Breathing independent of vocalization NormalOccasional labored breathing. Short period of hyperventilation. Noisy labored breathing. Long period of hyperventilation. Cheyne-Stokes respirations. Negative vocalization NoneOccasional moan or groan. Low level speech with a negative or disapproving quality Repeated troubled calling out. Loud moaning or groaning. Crying. Facial expression Smiling or inexpressive Sad. Frightened. Frown.Facial grimacing. Body language RelaxedTense. Distressed pacing. Fidgeting. Rigid. Fists clenched. Knees pulled up. Pulling or pushing away. Striking out. ConsolabilityNo need to console Distracted or reassured by voice or touch. Unable to console, distract, or reassure. Total 85

86 Feeding Tubes and ADRD No advantages with artificial feeding: No improved survival No improved nutritional status No improved functional status No prevention of aspiration Careful hand feeding is much more beneficial, for patient and caregiver, and safer. 86

87 Summary approach to the diagnosis of dementia. (Morley, JAMDA Jan. 2011)

88 Additional Reading 88

89 Additional Reading (continued) 89

90 Community Resources Many valuable resources available Important for health professionals to know what resources are available to their patients Important for health professionals to assist patients and families/caregivers in accessing available resources

91 Referral Considerations Cultural considerations and personal preferences Navigating the long-term care system is difficult and overwhelming Use health literacy concepts when possible Limited concepts  limit resources to 3-4 Plain language Teachback

92 Referral Considerations (continued) Alzheimer’s Association Warning Signs and Common Symptoms Where the individual is in the disease process Ask how the individual would like the referral facilitated Follow-up

93 Statewide Resources Alzheimer’s Association Aging & Disability Resource Network FAIR Lighthouse Medicaid Waiver Medicaid Personal Care Blanchette Rockefeller Neurosciences Institute (maintains WV AD registry) WV Center for End-of-Life Care Adult Protective Services Senior Legal Aid Long-Term Care Ombudsman Program

94 Aging & Disability Resource Network Focus is on navigating resources Long term care/support options Older adults, caregivers, health professionals can call Help for seniors and adults with disabilities Resource information, access, coordination Follow-up Walk-ins, appointment, or by phone Website with resources by county WV Aging & Disability Resource NetworkWV Aging & Disability Resource Network Statewide toll free line

95 Family Alzheimer’s In-Home Respite Program (FAIR) State in-home care program administered by County Aging Provider Individualized activities Written diagnosis of ADRD Respite for caregivers Up to 16 hours/week Sliding scale fee Contact the Bureau of Senior Services at (877)

96 Lighthouse Program In-home care for those seniors who have functional needs in their homes, but whose income or assets disqualify them for Medicaid services Up to 60 hours/month Age 60 or older Payment based on sliding scale fee Assistance needed in at least two of four areas: Personal care, mobility, nutrition and housekeeping Contact the Bureau of Senior Services at (877)

97 Aged and Disabled Medicaid Waiver Program In-home and community services to individuals 18 years and older who are medically and financially eligible Case management, homemaker, transportation, RN assessment and review Traditional model and Personal Options model Nursing home level of care – must have at least five areas of need Currently on Managed Enrollment List Individuals with AD may not qualify Contact local DHHR office, ADRC or Bureau of Senior Services Medicaid helpline at

98 Medicaid Personal Care Program In-home care services for individuals with full Medicaid benefits Medical and financial eligibility must be met Personal hygiene, dressing, feeding, nutrition, environmental support, health-related tasks At least 3 areas of need Contact the ADRC at or Bureau of Senior Services Medicaid helpline at

99 Alzheimer’s Association 24-Hour Toll-Free Helpline Care consultations Support Groups Newsletter Numerous resources for caregiver support Educational Materials and tailored information packets Access to devices to monitor whereabouts Community Workshops Lunch and Learn

100 Alzheimer’s Association (continued) Support Groups Individuals with younger-onset For individuals caring for a spouse Early stage support group Topics range from coping with the diagnosis to family and lifestyle changes Contact the Alzheimer’s Association’s 24-Hour Toll-Free Helpline

101 Other Important Statewide Resources Senior Legal Aid Referrals Elder Law FAQ State Long-Term Care Ombudsman Adult Protective Services State Health Insurance Assistance Program (SHIP)

102 Community Care Options Senior Centers Home Health Adult Day Care Assisted Living Respite Services In-home or at a facility Hospice Nursing Home Alzheimer’s Special Care Units Contact the ADRC at or Alzheimer’s Association at

103 Palliative Care EOLC for people with dementia - WV Center for End-of-Life Care: Timely discussions with patients and families Recognition of decline and poor prognosis Adequate diagnosis and treatment of pain Restricted use of feeding tubes Referral in a timely way to Hospice Remember the POST form 103

104 Clinical 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 Association Contact the Alzheimer’s Association at

105 Clinical Trials (continued) Government Clinical Trials Match Clinicaltrials.gov NIG National Institute on Aging Clinical Trials and Older People publication Alzheimer's Association TrialMatch Complete profile Specialist contacts individual to help identify appropriate clinical trial based on eligibility and criteria

106 Conclusion Even though AD is a progressive, and ultimately terminal condition, there is much that we can do: Provide access to community supports and resources Facilitate referrals to clinical trials 106

107 Special Thanks to: The Health Resources and Services Administration 107


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