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Cliff Singer, MD Chief, Geriatric Mental Health and Neuropsychiatry Acadia Hospital and Eastern Maine Medical Center Bangor, Maine. treatment of dementia in people with intellectual and developmental disabilities. Once Dementia is Diagnosed…… Know What You’re Treating:.

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Treatment of dementia in people with intellectual and developmental disabilities

Cliff Singer, MD

Chief, Geriatric Mental Health and Neuropsychiatry

Acadia Hospital and Eastern Maine Medical Center

Bangor, Maine

treatment of dementiain people with intellectual and developmental disabilities

Once dementia is diagnosed know what you re treating
Once Dementia is Diagnosed……Know What You’re Treating:

  • Primary Dementia: gradual, progressive

    • Alzheimer’s disease

    • Multi-infarct vascular dementia

    • Dementia with Lewy Bodies

    • Parkinson’s Disease Dementia

    • Frontotemporal Dementia

  • Secondary dementia: acute or subacute:

    • Traumatic Brain Injury

    • CNS Infections

    • Alcohol-related (Korsakoff’s)

  • “Reversible” Causes

    • Medical and psychiatric causes

Rule out depression and delirium
Rule Out Depression and Delirium*









*Fact is, this may not be so easy; they often co-exist.

Tasks in early dementia
Tasks in Early Dementia

  • Clarify diagnosis

  • Discuss prognosis

  • Discuss safety issues

  • Encourage quality of life activities

  • Basic geriatric care to minimize incontinence, maximize mobility and stability, address hearing and vision impairments

  • Planning for smooth transitions of care

More tasks in early dementia
More Tasks in Early Dementia

  • Caregiver wellbeing addressed

  • Consider cognitive enhancing meds

  • Adapt daily activities to changing abilities

  • Address pain to enhance comfort and mobility

  • Minimize iatrogenic problems

  • Advanced directives established

The edinburgh principles wilkinson h janicki m et al j intell disabil res 2002 46 3 279 84
The Edinburgh PrinciplesWilkinson H, Janicki M et al. J IntellDisabil Res 2002; 46:3:279-84

  • 1. Focus on QOL as that person would define it

  • 2. Focus on a person’s capabilities

  • 3. Involve the family

  • 4. Ensure good diagnostic assessment and treatment

  • 5. Work to keep people with ID and dementia in their chosen home

  • 6. Ensure people with ID and dementia have access to the broad range of dementia care in general community

  • 7. Advocate for research and public policy to meet current and future needs

Goals in severe dementia
Goals in Severe Dementia

  • Maintain function and maximize comfort

  • Explore options for change of residence based on caregiver capabilities and needs

  • Consider small details that may enhance quality of life

  • Minimize transitions between home and ED and hospital

Tasks for severe dementia
Tasks for Severe Dementia

  • Assess cognition, behavior, function, nutrition/hydration, pain/discomfort, caregiver wellbeing at frequent intervals

  • Make adjustments for decline in mobility

  • Make adjustments for change in diet and feeding strategies

  • Review advanced directives

  • Discuss transition to palliative care or hospice

Cognitive enhancing medicatinos cholinesterase inhibitors
Cognitive enhancing medicatinos: Cholinesterase Inhibitors

  • Many neurodegenerative diseases associated with reduced cholinergic function (↓Ach)

  • Inhibit acetylcholinesterase and ↑ Ach

  • Acetylcholine: promotes alertness, concentration, memory, visual perception

Cholinesterase inhibitors 2
Cholinesterase Inhibitors 2

  • Donepezil (Aricept: AD, Mild-Mod-Sev AD)

    • 5 mg daily for one month, then 10 mg daily. May go to 23 mg daily.

  • Galantamine (Razadyne ER: Mild-Mod AD)

    • 8 mg daily for one month, then 16 mg. May go to 24 mg daily.

  • Rivastigmine (Exelon Patch: Mild-Mod AD, PDD)

    • 4.6 mg/24 hrs. daily for one month, then 9.5 mg/24 hrs. May go to 13.3 mg/24 hrs.

Cholinesterase inhibitors 3
Cholinesterase Inhibitors 3

  • Alzheimer’s Disease

    • Start and maintain for at least 1 yr.

    • Expect improvement in some, slowed decline in most, mild psychotropic effect

    • Multiple small trials in DS w AD: generally positive results but evidence of efficacy not yet convincing (methodology?)


    • Expect better response and moderate psychotropic effect (VH, delusions)

    • No controlled data in DS or ID

Other clinical issues
Other Clinical Issues

  • When to stop?

  • Are they worth the money?

  • Relative contraindications: PUD, bradycardia, syncope, weight loss

  • Off label

    • Vascular dementia: possible benefit?

    • FTD, EtOH, TBI: No benefit

    • No controlled data in ID

Memantine namenda
Memantine (Namenda)

  • Effective in monotherapy but better as adjunctive therapy with ChEI

  • Improves neuronal function

  • Well tolerated

  • Approved for moderate to severe AD

  • Started at 5 mg daily, with weekly increases of 5 mg a day to 10 mg BID

  • Not proven to be effective in DS w AD

Case example 1
Case Example 1

  • Psychiatric consult requested for 62 year old man with Down’s Syndrome

  • Admitted to med-surg unit

  • Yelling for 6 weeks.

  • Consult request: “Help with yelling. Dementia getting worse.”

  • Patient kept in room down hallway with two doors to reduce disruptions from loud patients.

Case example 2
Case Example 2

  • 82 year old woman in SNF with large right frontal CVA three years ago

  • Consult requested because of months of intense crying episodes unresponsive to multiple trials of antidepressants

  • Cried with ADL care but also loud sobs and long periods of wakefulness at night

  • Exam: L hemiparesis w/contractures, marked abulia and apathy, but could make eye contact and show gentle smile

Treatment of dementia in people with intellectual and developmental disabilities

Behavioral Symptoms ADLloyd et al. J. Geriatric Psychiatry Neuro 8:4:213-216, 1995


  • Can be due to anything causing distress

  • R/O urinary retention, impaction, pain

  • Consider the environment/interpesonal

  • May be due to primary or secondary psychiatric disorders

  • But, dysphoric irritability is also a primary symptom of neurodegeneration

Symptom review
Symptom Review

  • MOMS

    • mobility, output, memory, senses

  • AND

    • aches, neuro, delirium/delusions

  • DADS

    • depression, appetite, dermis, sleep

Analegesics percentage of nh residents with dementia receiving analgesics
Analegesics:Percentage of NH Residents With Dementia Receiving Analgesics

Sources of pain
Sources of Pain

  • Obvious: arthritis, spondylosis, GERD, known injury or infection, headache, neuropathy, pressure ulcers, skin tears, joint deformities, compression fractures, shingles, fibromyalgia

  • Subtle: contractures, pressure points, immobility, dental and periodontal, constipation, urinary retention, unknown injury, tight clothes, ear infection

Ags guidelines in mild dementia
AGS Guidelines in Mild Dementia

  • Generally able to reliably report pain but less reliable in people with low IQ

  • Pose questions in present tense

  • Use various terms for pain, discomfort, hurt, uncomfortable, etc.

  • Use frequent direct questioning

  • Multidimensional pain instrument may be helpful but not necessary

Aps and ags in severe dementia
APS and AGS in Severe Dementia

  • Recommend using a validated pain scales for cognitive impaired or nonverbal patients

    • Scales are based on observation of behavior and expression

    • Scales have limitations (false + and -)

    • Verbal scales may be best in this group6

  • In DS w AD: Note recent changes in vocalizations, facial expression, body posture and movement patterns, agitation with ADL care

  • Physiologic clues of distress may be only clue: increased breathingor heart rate, increased BP

Behavioral clues
Behavioral Clues

  • Facial expressions and affect

  • Verbalizations/vocalizations

  • Irritability and agitation

  • Postural guarding

  • Restlessness

  • Withdrawn

  • Anorexic

  • Insomnia

Suggested scales
Suggested Scales

Numbers are percentages.

Discriminant validity zwakhalen s hamers j berger m 2007 journal of advanced nursing 58 5 493 502
Discriminant validityZwakhalen, S., Hamers, J. & Berger, M. (2007). Journal of Advanced Nursing, 58(5), 493-502.

Pade villanueva m et al jamda 2003 4 1 9 15
PADEVillanueva M et al. JAMDA 2003; 4:1:9-15

  • 24 items

  • Facial expression

  • ADLs

  • Caregiver’s judgment of pain

  • Good reliability and validity

  • 5-10 minutes to administer

Agitated behavior and pain husebo bs et al am j ger psych 2013 in press
Agitated Behavior and PainHusebo BS et al. Am J Ger Psych 2013; in Press

  • Controlled trial of pain intervention

  • 352 patients in Norwegian NHs

  • Dementia and moderate to severe pain

  • All patients in intervention group received scheduled analgesics in stepwise approach

  • CMAI factor analysis:

    • Verbal agitation showed greatest reduction

    • Aggressive behaviors declined

Most common behaviors in cohen mansfield study
Most Common Behaviors in Cohen-Mansfield Study: verbal agitation

  • General restlessness

  • Constant requests for attention

  • Pacing

  • Complaining

  • Repetitiveness

  • Cursing

  • Oppositional behavior

Scheduled analgesic trial for agitation
Scheduled Analgesic Trial for Agitation verbal agitation

  • Topical agents, lidocaine skin patch

  • Avoid NSAIDs, muscle relaxants

  • Acetaminophen 325-1000 mg TID or QID (max. 3000 mg/day)

  • Gabapentin 100-800 mg BID or TID

  • Tramadol 25-50 mg BID or TID

  • Opioid analgesics

    • Hydrocodone 2.5-5 mg Q4-6 hrs.

    • Oxycodone 2.5-5 mg Q 6 hrs.

    • Hydromorphone 1-2 mg Q 4-6 hrs.

    • Methadone 2.5 mg Q 8-12 hrs.

Opioid concerns
Opioid Concerns verbal agitation

  • Real

    • Opioid naïve patients may have strong reactions: over-sedation or delirium

    • Constipation

    • Tolerance

    • Diversion

  • Mythological

    • Addiction

    • Dementia: Opioids may increase confusion initially, but cognitive tolerance develops quickly and correlates with sedation

Case example 11
Case Example 1 verbal agitation

  • Quick exam revealed tender, distended abdomen

  • Abdominal X-ray confirmed obstipation

  • A wonderful nurse volunteered, did the work and the yelling stopped

Case example 21
Case Example 2 verbal agitation

  • Crying not due to depression but stroke-related affect dysregulation

  • But crying likely due to distress:

    • Pain from contractures and immobility

    • Anxiety during the night

  • Interventions:

    • Scheduled analgesia

    • Nighttime medication for anxiety and sleep

    • Environmental and comfort measures

Aggression verbal agitation

  • If due to agitation or delusions, treat with appropriate medications

  • If episodic, requires root cause analysis to identify triggers

  • Stimulus and response need to be modified

  • Medications do not work well for episodic aggression

Pacing and wandering
Pacing and Wandering verbal agitation

  • Consider trials of meds for anxiety, akathisia, pain, RLS

  • May be “agenda-driven”, such as looking for something

  • May be frontal hyperactivity (ADHD)

  • May be tardive akathisia

  • Need exercise and safe and secure surroundings

  • May be a terminal sign

Sexual disinhibition
Sexual Disinhibition verbal agitation

  • Consider mania (especially in women)

  • Consider legitimate need for intimacy

  • If stimulus bound (eg breast grabbing), isolate from stimulus

  • If driven by libido, medroxyprgesterone can be tried (case reports and small case series)

Apathy verbal agitation

  • Majority of patients with dementia

  • Not depression

  • Impoverished thinking

  • Patients are quiet, placid, withdrawn

  • No initiative, reluctant to shower

  • “Ghosts”….spouses feel lonely

  • Occasionally responds to stimulants, ChEI and memantine

Hallucinations verbal agitation

  • Visual: optimize vision, keep nightlights on, cholinesterase inhibitors and low dose quetiapine if Lewy Body or PDD

  • Auditory: optimize hearing, mask with “white noise”

Sundowning verbal agitation

  • Circadian delirium with no effective treatment

  • Suggestions:

    • Midday nap?

    • Music?

    • Structured activities?

    • Enhance exposure to bright light in AM?

    • Cholinesterase inhibitor?

    • Decrease stimulation?

    • Trials of low dose antipsychotic midday?

Sleep disorders
Sleep Disorders verbal agitation

  • Nighttime insomnia:

    • Modest effect: daytime activity, enhanced light exposure, melatonin augmentation

    • More effective: trazodone, quetiapine, analgesia

  • Daytime sleepiness: R/O obstructive apnea, reduce sedating meds, increase daytime activity

  • REM Behavior Disorder: clonazepam, melatonin, cholinesterase inhibitor

Psychotropics for agitation
Psychotropics for Agitation verbal agitation

  • Antipsychotics

    • Use when delusions present

    • Most evidence for efficacy in general dementia population

    • No data in ID dementia (fair quality data in younger ID people with aggressive behaviors)

  • Antidepressants (esp. SSRIs)

    • Use for irritability, anxiety, dysphoria

  • Antiepileptics (caution)

  • Benzodiazepines (caution)

All psychotropics nearly double mortality risk.

Sedation and lethargy = falls, aspiration and death

Treatment of dementia in people with intellectual and developmental disabilities

Targeting Psychotropics verbal agitation




Mood Stabilizer








REM sleep





calling out



physical aggression













Comfort measures
Comfort Measures verbal agitation

  • Music

  • Snacks and drinks

  • Scheduled toileting

  • Low stimulation

  • 1:1 activities: reading, singing, hand massage, games, etc.

Resources verbal agitation

  • National Task Group on Intellectual Disabilities and Dementia Practices


  • Alzheimer’s Disease Education and Referral Center


  • Family Caregiver Alliance


  • Alzheimer’s Foundation of America


  • NamesteEnd of Life Dementia Care


References verbal agitation

  • Herrman N and Gauthier S. Diagnosis and Management of Dementia: Management of Severe Dementia. CMAJ 2008; 179:2:1279-87

  • Hogan DB et al. Diagnosis and Management of Dementia: Nonpharmacologic and pharmacologic therapy for mild to moderate dementia. CMAJ 2008; 179:10:1019-26

  • Hogan DB et al. Diagnosis and treatment of dementia: Approach to management of mild to moderate dementia. CMAJ 2008; 179:8: 787-93

References verbal agitation

  • Sadowsky CH and Galvin JE. Guidelines for the management of cognitive and behavioral problems in Dementia. JABFM 2012; 25:3:350-366

  • Stanton LR and Coetzee RH. Down’s Syndrome and Dementia. Adv Psychiatric Treatment 2004; 10:50-8

  • Steinberg M and Lyketsos. Atypical antipsychotic use in patients with dementia: Managing safety concerns. Am J Psychiatry 2012; 169:9:900-906