Dementia in Palliative MedicineSue Charette M.D.

Objectives

•Review the definitions of & types of dementia

•Discuss common symptoms & problems experienced by patients with end-stage dementia & their caregivers

•Review hospice eligibility criteria for patients with dementia

What does dementia look like in Palliative Care? Examples…

• 77 year old woman with a 7 year history of Alzheimer’s Disease with newly diagnosed metastatic breast cancer.

• 64 year old man with a history of DM 2, HTN, and PAF with recurrent strokes now with progressive dysphagia & refusing G-tube.

• 84 year old man with end-stage dementia who is dependent in ADLS & IADLS and bed-bound now hospitalized with pneumonia.

Dementia

•acquired and persistent impairment in cognition and intellectual functioning

•the impairment interferes with everyday functioning

•prolonged course

•behavioral and psychological symptoms

Epidemiology

• Alzheimer’s Disease is present in 2-3% of patients over 65 and doubles in incidence for every 5 years after; 50% over 85 years

• Dementia is the 5th leading cause of death for persons over 65 years

• Survival of 4-7 years following diagnosis

• (UNIPAC 9, 2008))

Common Types of Dementia

•Alzheimer’s Disease - 35%•Mixed dementia – vascular + AD - 15%•Lewy body dementia – 15%•Vascular dementia – 10%•Fronto-temporal dementia – 5%

Alzheimer’s Disease

•Characterized by amyloid plaques & neurofibrillary tangles

•Hippocampus & neo-cortex are affected•DSM-IV-TR criteria:

▫Memory impairment▫At least one other cognitive disturbance

such as aphasia, agnosia, apraxia, or executive functioning

▫Deficits are severe enough to affect function

Alzheimer’s Disease

•Early – memory loss•Later – disorganized thoughts, confusion,

disorientation, language difficulties, executive function declines leading to impaired judgment

•Psychological symptoms – agitation, psychosis, mood disorders

•Time course: 4-7 years

Alzheimer’s Disease

•FDA approved treatments:▫Cholinesterase inhibitors

donepezil (Aricept) rivastigmine (Exelon) galantamine (Razadyne)

▫N-methyl-D-aspartate (NMDA) receptor antagonists memantine (Namenda)

•Improved cognitive, behavioral and functional outcomes

Vascular Dementia

•Neuronal loss or dysfunction due to vascular causes including: ▫Cortical infarcts▫Subcortical infarcts▫Leukoaraiosis (thinning of the cerebral

white matter, e.g. “white matter ischemic changes)

•Presence of the vascular changes, may predispose the clinical expression of AD

Lewy Body Dementia

•Alpha-synuclein protein deposition in the cortex and subcortex

•Cognitive impairment is characterized by memory loss, deficits in attention, executive functioning & visual spatial skills

•Core features: cognitive impairment, fluctuating attention, visual hallucinations, parkinsonism

•Suggestive features: REM sleep-behavior disorder & neuroleptic sensitivity

Characteristics of Dementia

•Early in the disease: follow the pattern typical for that type of dementia

•Course: gradual deterioration punctuated by periods of worsening cognitive & functional decline, usually associated with acute illness

•Later in the disease: clinical symptoms become similar among the various sub-types

Advanced Dementia & Acute Illness

• Life-threatening events in patients with advanced dementia: UTI, pneumonia, hip fracture

• 50% of patients will have 6-month mortality following hospitalization for pneumonia or hip fracture

Treatment Strategies

• Earlier in the disease: ▫Treatments are different depending on type

• Later in the disease: ▫Treatments are similar across types

Categories of Dementia

•Mild•Moderate•Severe•Terminal

Dementia Management

• Acetylcholinesterase inhibitors▫donepezil▫galantamine▫rivastigmine

• NMDA inhibitor▫memantine

Hospice Criteria for Dementia

• Severity of dementia > Functional Assessment Staging (FAST) Stage 7-C:▫Inability to walk, dress, or bathe without

assistance▫Urinary and fecal incontinence▫Inability to speak more then six different

intelligible words per day

(from NHPCO’s Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diseases, 2nd Ed. 1997)

Hospice Criteria for Dementia• > 1 severe comorbid condition within past 6 months:

▫ Aspiration pneumonia▫ Pyelonephritis▫ Septicemia▫ Multiple, progressive stage 3-4 decubiti▫ Fever after antibiotics

• Inability to maintain fluid/caloric intake to sustain life if feeing tube in place▫ Weight loss >10% in 6 months▫ Serum albumin <2.5 g/dl

(from NHPCO’s Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diseases, 2nd Ed. 1997)

FAST Stages(Luchins, 1997)

• Functional Assessment Staging (FAST)• Stages

1.  No difficulties2.  Subjective forgetfulness3.  Decreased job functioning and organizational capacity4.   Difficulty with complex tasks, instrumental ADLs5.   Requires supervision with ADLs6.   Impaired ADLs, with incontinence7.  A. Ability to speak limited to six words     B. Ability to speak limited to single word     C. Loss of ambulation     D. Inability to sit     E. Inability to smile     F. Inability to hold head up

Mortality Risk Index(Mitchell, 2004)

• Mortality Risk Index Score (Mitchell)

Points   Risk factor

1.9      Complete dependence with ADLs1.9      Male gender1.7      Cancer1.6      Congestive heart failure1.6       O2  therapy needed w/in 14 day1.5      Shortness of breath1.5      <25% of food eaten at most meals1.5      Unstable medical condition1.5      Bowel incontinence1.5      Bedfast1.4      Age > 83 y1.4      Not awake most of the day    Risk estimate of death within 6 months

Score                               Risk %0                                       8.9  1-2                                   10.83-5                                   23.26-8                                   40.49-11                                 57.0= 12                                 70.0

• ____________________________________________

FAST vs. MRI

• FAST -> 47 patients with advanced dementia on hospice▫Only 12 could be assigned a FAST stage,

and those who were at stage 7C or greater, mean survival was 3.2 months

• MRI -> data from 11,000 newly admitted nursing home patients▫score of ≥ 12, 70% died within 6 months

FAST vs. MRI

Compared to FAST Stage 7C, the MRI had greater predictive value of six month

prognosis.

 

ADEPT Trial(Mitchell, 2010)

• More recent research found that 12 variables were able to predict mortality risk better than hospice eligibility guidelines for nursing home patients with advanced dementia.

• Variables include: length of stay, age, male, dyspnea, pressure ulcers, total functional dependence, bedfast, insufficient intake, bowel incontinence, body mass index, weight loss, and congestive heart failure.

Pain in Patients with Dementia• Painful conditions are more common –

osteoarthritis, gout, spinal stenosis, fractures, PAD, peripheral neuropathy

• 50 and 85% prevalence of pain in the ambulatory & long term care settings, respectively

• Patients with cognitive impairment are at greater risk of inadequate analgesia

(UNIPAC 9)

Pain Assessment in Advanced Dementia (PAINAD)(Warden, 2003)

•breathing: labored breathing or hyperventilating

•vocalization: moaning or crying•facial expression: frowning or grimacing•body language: clenching fists or pushing

away caregivers•consolability: an inability to be comforted

Pain in Patients with Dementia

•Patients’ pain signature

•Caregiver’s input

•Opioids can be safely used in dementia patients

Behavioral & Psychological Symptoms in Dementia• Mood disorders

• Apathy

• Psychosis▫Delusions▫Hallucinations

• Agitation

Causes Contributing to Agitation•Physical symptoms (pain)•Psychological symptoms (depresssion)•Medical illness (delirium, urinary

retention)•Unmet need (hunger, soiled diaper)•Environmental (overstimulation)•Medication (decrease or discontinue)•Dementia

Pharmacologic Options for Agitation

• Atypical antipsychotic agents▫Olanzapine, risperidone, quetiapine

• SSRIs• Anticonvulsants

▫valproic acid, carbamazepine, gabapentin• Benzodiazepines• Cholinesterase inhibitors• NMDA receptor antagonists

Issues in End-Stage Dementia

•Eating difficulties▫Apraxia▫Dysphagia

•Infections•Hip fractures•Medical conditions•Medications

Tube Feedings

• Should not be placed in end-stage dementia

• Do not reduce aspiration risk

• Are associated with an increased risk of pressure ulcers

• Do not improve quality of life

Caregivers of Patients with Dementia

• Provide care for longer periods, e.g. years

• Experience greater challenges▫Increased anxiety & depression▫Physical demands of caregiving▫Fewer outside activities & connections▫Loss of income & financial resources

• Hospice offers support and options for respite

Goals of Care

• Discussions should begin early in the disease process when patient has decision-making capacity

• What are the patient’s wishes?

• Quality of life should be the focus

• Hospice and palliative care

References

•Olson E. Dementia and Neurodegenerative Disorders. In: Morrison RS, Meier DE, eds. Geriatric Palliative Care. New York, NY: Oxford University Press; 2003.

•Luchins DJ, Hanrahan P, Murphy K. Criteria for enrolling dementia patients in hospice. J Am Geriatr Soc. 1997; 45:1054-1059.

References• Warden, V, Hurley AC, Volicer, V. (2003). Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) Scale. J Am Med Dir Assoc, 4:9-15

• Thomas E. Finucane, MD; Colleen Christmas, MD; Kathy Travis, MD. Tube Feeding in Patients With Advanced Dementia: A Review of the Evidence. JAMA. 1999;282(14):1365-1370.

References

• Mitchell SL, Kiely DK, Hamel MB, et al. Estimating prognosis for nursing home residents with advanced dementia. JAMA. 2004; 291:2734-2740.

• UNIPAC 9: The hospice and palliative medicine approach to selected chronic illnesses: dementia, COPD, and CHF. AAHPM, 2008.

References

• Mitchell et al. The Advanced Dementia Prognostic Tool (ADEPT): A Risk Score to Estimate Survival in Nursing Home Residents with Advanced Dementia. J Pain Symptom Manage. 2010 November; 40(5): 639-651.

• Teno et al. Feeding Tubes and the Prevention or Healing of Pressure Ulcers. Arch Intern Med. 2012;172(9):697-701