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Palliative Medicine in Alzheimer's disease and other dementia disorders

  1. Palliative Medicine in Alzheimer's disease and other dementia disorders Presenter : Dr Ruparna Khurana, SR Palliative Medicine Moderator : Prof. Seema Mishra, Onco-anaesthesia and Palliative Medicine Dr Prasun Chatterjee Associate Professor, Department of Geriatrics, AIIMS
  2. Case Scenario • A 70 yr old male presented with complaints of progressive memory loss for past 2 yrs, difficulty in naming objects, driving car and money handling. for the past 1 month, he also had difficulty in dressing and eating and got agitated easily. The complaints had increased so much that he was confined to home now. • Physical examination- BP 152/90, rest NAD. • MMSE – 19/30 • ADL 4/1/2023 3
  3. Outline • Dementia • Epidemiology/ types • Alzheimer's disease • Risk factors/Pathophysiology • Symptomatology and diagnostic workup • Prognosis • Management strategies • Palliative care in AD/dementia • Barriers in Palliative care • Conclusion • MCQs
  4. Dementia • Disorder characterized by decline in cognition • Involving one or more cognitive domains • Learning and memory, language, executive function, complex attention, perceptual-motor, social cognition Memory $Learning Language Executive function Attention Perceptual motor Soci al cogn ition
  5. • The deficits : decline from previous level of function • Severe enough to interfere with daily function and independence. • Disease of the elderly population
  6. AD • Progressive, irreversible neurodegenerative disorder of the elderly • First described by Dr. Alois Alzheimer, a German psychiatrist in 1906 • Most common form of dementia – 80% • Most common age of onset : 65yrs • Prevalence : 24.3 million worldwide  expected to triple by 2050
  7. • Incidence increases with age • Median survival : 4.2y men, 5.7y women • Risk factors : hypertension, type 2 DM, obesity, physical inactivity, cardiovascular disease, smoking, air pollution, drugs
  8. • Pneumonia is the most common cause of death in afflicted patients • Heavy existential load : patients , loved ones, health care providers
  9. Pathophysiology and diagnosis of Alzheimer
  10. • Enzymes act on the APP (amyloid precursor protein) and cut it into fragments. The beta-amyloid fragment is crucial in the formation of senile plaques in AD
  11. Symptoms Memory Executive dysfunction Visuospatial language Behaviour and personality
  12. Executive function and judgment/problem solving Multitasking Abstract reasoning Inability to complete tasks Anosognosia : reduced insight into deficits
  13. Behavioral and psychologic symptoms Apathy, social disengagement, and irritability. Depression Agitation, aggression, wandering, and psychosis (hallucinations, delusions, misidentification syndromes).
  14. •Early • Short-term memory loss : insidious onset and progressive • Sleep disturbance • Apraxia • Olfactory dysfunction •Middle • Behavioral problems • Dependence in day-to- day living •Late • Total dependency • Loss of speech • Failure to recognize family members • Difficulty in standing/ walking • Confinement to bed/ wheelchair • Difficulty in eating and swallowing • Seizures
  15. Diagnostic workup Clinical assessment Neuropsycho logical testing Neuroimaging Biomarkers Lab / genetic tests The clinical criteria for AD include • History of insidious onset and progressive course of cognitive decline • Exclusion of other etiologies(metabolic derangements/ delirium/ intoxication/ concomitant neuropsychiatric disorders) • Documentation of cognitive impairments in one or more domains
  16. DSM-5 MAJOR NEUROCOGNITIVE DISORDER DIAGNOSTIC CRITERIA A. Evidence of significant cognitive decline from a previous level of performance in one or more cognitive domains based on- 1. Concern of the individual,  a knowledgeable informant, or  the clinician that there has been a significant decline in cognitive function. DSM 5, AMERICAN PSYCHIATRY ASSOCIATION 21
  17. 2. A substantial impairment in cognitive performance, preferably documented by standardized neuropsychological testing or, in its absence another quantified clinical assessment. 4/1/2023 22
  18. B. The cognitive deficits interfere with independence in everyday activities (i.e., at a minimum, requiring assistance with complex instrumental activities of daily living such as paying bills or managing medications). C. Delirium excluded. D. Another mental disorder excluded (e.g., major depressive disorder, schizophrenia). 4/1/2023 23
  19. Diagnostic workup Clinical assessment Neuropsycho logical testing Neuroimaging Biomarkers Lab / genetic tests MRI: • both generalized and focal atrophy • white matter lesions • reduced hippocampal volume • medial temporal lobe atrophy
  20. Diagnostic workup Clinical assessment Neuropsycho logical testing Neuroimaging Biomarkers Lab / genetic tests • Experimental and investigational role • Decreased APOE/ APOC protein in plasma • CSF : A beta 42/ 40 • Increased CSF tau/ hypo tau protein
  21. Prognostication ..
  22. MMSE • Developed by Folstein(1975) • Called "mini" because it did not test mood or thought disorders. • Not actually meant for diagnosis of dementia. • 30-point screening instrument that assesses orientation, immediate registration of three words, attention and calculation, short-term recall of three words, language, and visual construction. Folstein, Folstein, & McHugh, 1975 28
  23. • Cut-off for dementia screening - ≤ 23/30 Folstein (J Psychiat Res 1975, 12) • Sensitivity of 86%; Specificity of 92% O'Connor et al (J Psychiat Res 1989, 23)
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  26. Management Multidisciplinary team effort :- • Geriatrician • Neurologist • Psychiatrist /psychologist • Palliative care specialist • Occupational therapist • Physiotherapist • Nursing staff • Social worker • Nutritionist
  27. Management strategies Disease specific Alzheimers •Choline esterase inhibitors : donepezil/ rivastigmine/galantamine •NMDA antagonist : Memantine Symptom wise management Palliative care approach
  28. Palliative care in AD/ Dementia
  29. When does Palliative Care Begin? (CHPCA, 2002)
  30. Comprehensive review with 11 domains and 57 recommendations
  31. 1. Applicability of PC 2. Person-centred care, communication and shared decision making 3. Setting care goals and advance planning 4. Continuity of care 5. Prognostication and timely recognition of dying 6. Avoiding overly aggressive, burdensome or futile treatment
  32. 7. Optimal treatment of symptoms and providing comfort 8. Psychosocial and spiritual support 9. Family care and involvement 10. Education of the health care team 11. Societal and ethical issues
  33. Main issues • Pain • Eating and swallowing problems • Loss of independence/ motility • Bladder and bowel incontinence • Recurrent infections
  34. Main issues • Decubitus ulcers • Behavioural and psychological symptoms (aggressiveness/ restlessness/ wandering/ psychosis) • Pre existing comorbidities/ geriatric issues • Care giver burden (emotional/ spiritual/ social / finanancial/ethical)
  35. PAIN • Under reported and under treated The best validated tools include • The Pain Assessment in Advanced Dementia (PAINAD) • Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC) • The Doloplus-2 scale (Pargeon and Hailey, 1999)
  36. Acetaminophen (paracetamol) • First line of therapy for mild pain / suspected pain • Associated with improved activity levels, social engagement (Chibnall et al., 2005; Husebo et al., 2011)
  37. NSAIDS / Opioids • Use with caution • Risks of gastro-duodenopathy, renal failure, cardiovascular complications, and fluid retention. • Opioids : moderate or severe pain
  38. Opioids • Pain not responding to non-opioid therapy. • Around-the-clock dosing and the use of a long-acting formulation : preferred • Undertreatment of pain is a greater risk factor for the development of delirium than the use of opioids in hospitalized adults with cognitive impairment (Morrison et al., 2003)
  39. Eating and swallowing problems • Dysphagia : transition from moderate to severe AD • R/O dental carries/ xerostomia/ depression/ pain/ nausea • Mastication problems : TMJ arthrosis
  40. Eating and swallowing problems • Patients with AD have cravings for sweets • Ice cream and milk shakes : alternative to traditional meals • Providing finger foods if difficulty in grasp/handle utensils • Baking cookies before meals to stimulate appetite • Providing pleasant music, social interaction, and personal attention at meal times to make eating more of a social event
  41. • Family members/ HCP : decision regarding NG/PEG tube • One-third of nursing home residents : have feeding tubes • Feeding tubes : NO improvement in survival prevention of aspiration pneumonia decrease the risk for pressure ulcers improve patient comfort (Finucane et al., 2019)
  42. • One-third of individuals : physical or pharmacologic restraints to prevent tube dislodgement • Careful hand feeding and proper oral care should be recommended as better alternatives (Teno et al., 2011)
  43. Annals of Long- Term Care: Clinical Care and Aging. 2013;21(1):36-39
  44. Benefit Risk improvements in blood count, renal function, and electrolyte and hydration status Higher mortality rates nutrition related complications Comfort and convenience of caregivers Higher risks of developing new pressure sores and decreased chances of healing Logistically feasible, less staff require ed Higher incidence of aspiration pneumonia Continuous feeding is possible Colonisation of OPX with GNB
  45. • No recommendation for any other nutritional product for persons with dementia to correct cognitive impairment or prevent further cognitive decline. (Grade of evidence: very low). • Each decision for or against artificial nutrition and hydration for patients with dementia is made on an individual basis with respect to general prognosis and patients’ preferences. (Grade of evidence: very low). • Tube feeding for a limited period of time in patients with mild or moderate dementia, to overcome a crisis situation with markedly insufficient oral intake, if low nutritional intake is predominantly caused by a potentially reversible condition. (Grade of evidence: very low)
  46. Neuropsychiatric symptoms • Nearly all develop some psychiatric symptoms • Repetitive mannerisms and vocalizations or physical aggressiveness • Associated with decreased QOL : patients and carers and an increased caregiver burden • Affects with the caregiver’s decisions for nursing home admission
  47. Depression • Incidence: 50% of individuals with Alzheimer’s disease and is often chronic in nature • Diagnosis : challenging in the background of cognitive impairment • Antidepressant drugs : limited evidence/equivocal results • Two large RCTs : no benefit over placebo (Steinberg et al., 2004)
  48. Treatment • Selective serotonin reuptake inhibitor (SSRI), serotonin and norepinephrine (noradrenaline) reuptake inhibitor (SNRI) : safer • Documenting the Antecedents of the behaviour Behavioural disturbance Consequences of the behaviour • ABCs… can help reveal unmet needs and triggers for a particular problem
  49. Advanced care planning: Need Especially important as patients are unable to communicate Preferences not documented during the early course Families do not realize the need till moments of crisis Inadequate understanding in treating clinicians Worse in Poor resource settings like India where clinicians have less time for such discussions
  50. Advanced care planning Key • Selection of an agent who will make decisions when patient does not have capacity Advanced directive • Priorities based on patient’s goals and values • All discussions with surrogate decision maker should be documented • Nutrition, hydration, CPR, Intubation Goals of care • Discussion about poor prognosis with all family members • Realistic hope: Hope for the best, prepare for the worst
  51. Objectives of EOLC • Achieve a ‘Good Death’ for any person who is dying, irrespective of the diagnosis, duration of illness and place of death • Emphasis on QOL and QOD (Quality of Death ). • PC is a human right, and every individual has a right to a good, peaceful and dignified death. End of life Care (EOLC)
  52. Identify Assess Plan Provide Reassess Reflect Six Step process involved in EOLC Communication Ethical Principles
  53. Steps Description Step 1 Identify When to initiate Whom to initiate Step 2 Assess Assessment of physical symptoms and distress Assessment of non physical issues. Assessment of communication needs Step 3 Site of care Review existing care protocol/ medication chart and stop all unnecessary intervention /medication/ investigations. Anticipatory prescription writing Communication, consensus, consent Step 4 Provide Access to essential medication for EOLC symptom control Dedicated space and round the clock staff Special care needs of patient and family After death care and bereavement support Step 5 Reassess Ensure adequate control of pain and other symptoms through ongoing assessment Document any variance and initiate prompt action Step 6 Reflect Review the care process and identify if there were any gaps Improving the EOLC process by constant reflection and mindful practice
  54. Caring for a loved one with late-stage Dementia is difficult to say the least. Caregivers will encounter physical and emotional obstacles
  55. Caregivers are often viewed as babysitters, but they are better described as superheroes!
  56. Reminiscing therapy Reminiscing, or sharing memories from the past, is an enjoyable way to connect with someone with Alzheimer’s or dementia.
  57. Barriers to palliative care
  58. •Prognosis paralysis : prognostic uncertainty and inadequate EOLC due to delaying/denying PC exposing patients to uncontrolled symptoms, over- procedural and pharmacologic treatment, futility of care, and unnecessary suffering •Time constraints •Difficulty in assessment of symptoms
  59. • Under recognition of terminal stage • Staff education and training • Lack of communication between families and HCP/ amongst HCPs • Legal issues
  60. Conclusion • AD and dementia are progressive, incurable terminal neurodegenerative diseases with a relentless course culminating in death • The sufferings of the afflicted patients and their families warrant specialist palliative care to be initiated as early as possible • Continuous honest communication, timely symptom assessment and control and early initiation of talks about EOLC/ ACP /AD are the cornerstones of good palliative care
  61. Thank you
  62. Recapitulate? • 70 yr old male presents with progressive memory loss for past 2 yrs. He also complaints of difficulty in naming objects and driving car and money handling. for the past 1 month he has difficulty in dressing , eating and gets agitated easily and complaints hv increased that he is confined to home now, only able to do simple chores, no hobbies • Physical examination- BP 152/90, rest NAD. • MMSE – 19/30
  63. Cognitive domains involved (4) • 1) Memory and learning : difficulty naming objects/ insidious onset/ progressive • 2) Visuospatial : Driving difficulty • 3) Executive functioning / judgement : difficulty handling money • 4) Behaviour/ personality : agitation • MMSE : 19
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  66. Symptom management • General prognostication about the disease course / what to expect/ survival/ ACP/ AD • Eating problems : rule out correctable factors finger foods counsel regarding pros and cons of tube feeding • Agitation : rule out metabolic derangements/ drug interactions SSRIs
  67. MCQS 1) Second most common type of dementia? • A) DLB • B) FTD • C) Alzheimer’s • D) Vascular dementia
  68. 2) FAST 7a includes A) Inability to hold head up B) Speech limited to less than 6 intelligible words per day C) Sit up without assistance D) Inability to smile
  69. 3) Documenting the ABCs by the patient is an intervention for treating • A) Anorexia • B) Anxiety • C) Anhidonia • D) Apathy
  70. 4) All of them are prognostication tools for dementia, except • A) FAST • B) ADEPT • C) Mini COG • D) PACSLAC