Integration of palliative medicine in advanced neurological disorders like dementia, motor neuron disease, multiple sclerosis, amyotrophic lateral sclerosis, stroke is the need of the hour as these patients have a progressive incurable illness with heavy symptom burden and psychosocial implications

2. 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

3. 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

4. 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

6. 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

7. • The deficits : decline from previous level of function
• Severe enough to interfere with daily function and
independence.
• Disease of the elderly population

9. 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

10. • 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

11. • Pneumonia is the most common cause of death in afflicted
patients
• Heavy existential load : patients , loved ones, health
care providers

12. Pathophysiology and diagnosis of
Alzheimer

13. • 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

16. Symptoms
Memory
Executive
dysfunction
Visuospatial
language
Behaviour and
personality

17. Executive function and judgment/problem
solving
Multitasking
Abstract reasoning
Inability to
complete tasks
Anosognosia :
reduced insight into
deficits

18. Behavioral and psychologic symptoms
Apathy, social disengagement, and irritability.
Depression
Agitation, aggression, wandering, and psychosis
(hallucinations, delusions, misidentification
syndromes).

19. •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

20. 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

21. 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

22. 2. A substantial impairment in cognitive performance, preferably
documented by
standardized neuropsychological testing or, in its absence
another quantified clinical assessment.
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23. 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

24. 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

25. 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

26. Prognostication ..

28. 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

30. • 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)

31. Copyrights apply

32. Copyrights apply

35. Management
Multidisciplinary team effort :-
• Geriatrician
• Neurologist
• Psychiatrist /psychologist
• Palliative care specialist
• Occupational therapist
• Physiotherapist
• Nursing staff
• Social worker
• Nutritionist

36. Management strategies
Disease specific
Alzheimers
•Choline esterase inhibitors :
donepezil/
rivastigmine/galantamine
•NMDA antagonist : Memantine
Symptom wise
management
Palliative care approach

37. Palliative care in AD/ Dementia

39. When does Palliative Care Begin?
(CHPCA, 2002)

41. Comprehensive review with 11 domains
and 57 recommendations

42. 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

43. 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

45. Main issues
• Pain
• Eating and swallowing problems
• Loss of independence/ motility
• Bladder and bowel incontinence
• Recurrent infections

46. 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)

47. 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)

49. 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)

50. NSAIDS / Opioids
• Use with caution
• Risks of gastro-duodenopathy, renal failure, cardiovascular
complications, and fluid retention.
• Opioids : moderate or severe pain

51. 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)

52. Eating and swallowing problems
• Dysphagia : transition from moderate to severe AD
• R/O dental carries/ xerostomia/ depression/ pain/ nausea
• Mastication problems : TMJ arthrosis

54. 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

55. • 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)

56. • 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)

57. Annals of Long-
Term Care: Clinical Care and Aging.
2013;21(1):36-39

59. 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

61. • 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)

62. 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

63. 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)

64. 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

65. 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

66. 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

67. 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)

68. Identify
Assess
Plan
Provide
Reassess
Reflect
Six Step process involved in EOLC
Communication
Ethical Principles

69. 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

70. Caring for a loved one with late-stage Dementia is difficult
to say the least. Caregivers will encounter physical and
emotional obstacles

71. Caregivers are often viewed as babysitters, but they
are better described as superheroes!

73. Reminiscing therapy
Reminiscing, or sharing memories from the
past, is an enjoyable way to connect with
someone with Alzheimer’s or dementia.

75. Barriers to palliative care

77. •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

78. • Under recognition of terminal stage
• Staff education and training
• Lack of communication between families and HCP/ amongst
HCPs
• Legal issues

79. 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

80. Thank you

81. 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

82. 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

83. Copyrights apply

84. Copyrights apply

85. 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

86. MCQS
1) Second most common type of dementia?
• A) DLB
• B) FTD
• C) Alzheimer’s
• D) Vascular dementia

87. 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

88. 3) Documenting the ABCs by the patient is an intervention for treating
• A) Anorexia
• B) Anxiety
• C) Anhidonia
• D) Apathy

89. 4) All of them are prognostication tools for dementia, except
• A) FAST
• B) ADEPT
• C) Mini COG
• D) PACSLAC