Transcript Aging Persons with Intellectual Developmental Disorders (IDD)

Aging in Persons
with Intellectual
and Developmental
Disabilities
Kathleen Pace Murphy, PhD, MS, GNP-BC, RN
University of Texas Health Science Center at Houston, Medical School,
Division of Geriatrics and Palliative Medicine
Jillian Day, MS
Vita Living, Inc.
Journey for Knowledge
Objectives
• Define Intellectual Development Disabilities
(IDD)
• Describe the demographic aging trends in
persons with IDD
• Outline principles of caring for older adults
with IDD
• Review the National Task Force on IDD
Practices for early detection and screening for
dementia in persons with IDD
Define Intellectual Development
Disabilities
Objective One
Definition
A severe, chronic disability of an individual that: is attributable to a
mental or physical impairment or a combination of mental and
physical impairments; is manifested before the individual attains
age 22; is likely to continue indefinitely; results in substantial
functional limitations in three or more of the following areas of
major life activity:
(a) self care
(b) receptive and expressive language
(c) learning
(d) self-direction,
(e) capacity for independent living and
(f) economic self-sufficiency
(Texas Council for Developmental Disabilities)
Life Expectancy
• General Population – increased by 30 percent
over the past 80 years
– In Harris County, adults 65 and older will increase
from 388,000 in 2013 to 985,000 by 2050.
• Those with IDD – For someone with Down
syndrome, has increased dramatically from 25
in 1983 to 60 today
• Texans with disabilities - 3.1 million as of 2013
– Two most prevalent types are an ambulatory or
independent living disability.
Describe the demographic aging
trends in persons with IDD
Objective Two
Demographic Trends
• Harris County
– Adults 65 and older will increase from 388,000 in
2013 to 985,000 by 2050.
• Texans with disabilities
– Those in this group ages 65 and older will increase
from the current 1.2 million to 3.3 million by 2040.
• Client Profile - Kathy
Projected Comparison of Texans 65+ & Texans With Disabilities 65+
7,000,000
6,218,199
6,000,000
5,415,439
5,000,000
4,095,379
4,000,000
3,000,000
2,794,842
2,425,098
2,112,021
2,000,000
1,597,198
1,000,000
1,089,988
0
2012
2022
Texans 65+*
2032
Texans 65+ with a Disability**
2042
Outline four principles of caring
for older adults with IDD
Objective Three
BIOLOGICAL VS CHRONOLOGICAL AGE
Aging and Older Adults
with IDD
• Doubling of the population to
1.2 million in 15 years.
• More likely to develop chronic
health conditions at younger
ages that other adults because
– Biological factors
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Cataracts
Hearing loss
Osteopenia
hypothyroidism
– Limited access
– Lifestyle issues
– Environmental issues
• Age related changes occurring in family
members who are often the primary
caregivers
• Reduce barriers to health care access
– PCP who are knowledgeable and experienced with
IDD population
– Behavioral issues
– Communication issues
– Physical challenges
Unique Physical Needs
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Pain
Polypharmacy
Vision and hearing
Dental Disease
Musculoskeletal disorders
GI disorders
Vaccinations
Unique mental health needs
-Misdiagnosis
-Non-verbal patients
-Screening tools
Aberrant Behavior Checklist
Psychiatric Assessment Schedule for
Adults with I/DD
Principals to consider
• Do not base plan of care for an older adult with IDD on
chronological age cut-offs.
• Goal of care for an older adults with IDD should be optimizing
function and independence
• Existing disabilities can contribute to a confusing medical
disease presentation in light of confounding physical, mental
and functional changes related to IDD, aging, lifestyle, and/or
medications.
• IDD disabilities may modify the aging process, either
mimicking or masking diseases or other disorders.
• Baseline functional change may be the best indicator of
health and illness.
Source: World Health Organization. Healthy Ageing: Adults with Intellectual
Disabilities Physical Health Issues. (2001). Available from:
http://www.who.int/mental_health/media/en/21.pdf
Planning care delivery
• Tinglin (2014) proposed the following set of
questions:
– What is the best way to communicate with this
patient?
– Will the environment hinder the flow of the
appointment?
– Does the patient require sedation to complete
tests or exams?
– Can and will the caregiver assist with the visit?
– Does the patient use adaptive devices (iPad, voice
interpreters)?
Recommended Male Health Screen (1/2)
Merrick J, Morad M, & Carmeli E. Intellectual and Developmental Disabilities: Male
Health 2014. Frontiers in Public Health 2 (208):1-6. doi: 10.3389/fpubh.2014.00208
• Annual BP screening – 18 years and older
• Lipid panel/glucose screening and heart disease
prevention yearly from age 35 years on
• Vision and hearing examinations yearly
• Immunizations after 19 years of age
– Tetanus-diphtheria and acellular pertussis (Tdap) vaccine
once; then tetanus-diphtheria booster every 10 years
– Consider HPB vaccine
– Shingles or herpes zoster and pneumococcal vaccine
once after 60 years
– Annual flu vaccinations
Recommended Male Health Screen (2/2)
Merrick J, Morad M, & Carmeli E. Intellectual and Developmental Disabilities: Male Health 2014.
Frontiers in Public Health 2 (208):1-6. doi: 10.3389/fpubh.2014.00208
• Infectious disease
– Depends on lifestyle and risk behavior screening – syphilis,
chlamydia, HIV
• Height, weight, BMI, waist circumference annually
• Screening for alcohol and tobacco use and counseling
• Screening for depression and mental health regularly
• Colon cancer screening with FOB annually after 50 years.
– Sigmoidoscopy and colonoscopy if possible every 5-10 years (5 if
+Fhx)
• Osteoporosis screening with annual screening at age 40 years for
people in residential care and age 45 years for community residents
• Prostate cancer screening with PSA blood test should be considered
after age 50 years
• Abdominal aortic aneurysm screening at age 65 by abdominal US.
Preventative Care Checklist Form:
Males with IDD
http://vkc.mc.vanderbilt.edu/etooklit/wpcontent/uploads/Checklist-Male.pdf
http://vkc.mc.vanderbilt.edu/etoolkit/wpcontent/uploads/Checklist-Female.pdf
Female Preventative Care Checklist
• Adequate vitamin D > 50 years
• ASA for CVD (55-79 years) if benefits outweigh risks of
hemorrhage
• Mammography – 50-74, q1-2 years; consider if 40-49
years)
• Hemoccoult multiphase q1-2 yrs. (50-75 years) OR
sigmoidoscopy q 5 yrs. with FOBT q3 yrs. OR
Colonoscopy q10 years
• Fasting lipid profile > 45 years
• FBG q3 years
• BMD q2-3 years if normal or q1-2 years >65
• TSH/T4 q1-5 years,
Other Female Considerations
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Menopause
Osteoporosis
Heart disease
Cancer risk
Urinary incontinence
Functional Assessment
• Utilizing functional age rather than
chronologic age is much more appropriate
• Assessment of function
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ADL, IADL, Advanced ADL
Vision, hearing gait, continence, gait, falls
Depression
Medication Reviews
Review the National Task Force
on IDD Practices for early
detection and screening for
dementia in persons with IDD
Objective Four
HTTPS://WWW.YOUTUBE.COM/WATCH
?V=K_X9ZJYQZU8
Dementia
• Progressive loss of brain function
• Associated with aging
• Memory disorder, personality and behavioral
changes and impaired reasoning
• Various types, the most prevalent are:
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Alzheimer’s disease
Vascular dementia
Fronto-temporal dementia
Lewy Body dementia
Mixed dementia
The numbers
• Sixth leading cause of death in the U.S.
• 5.2 million Americans are affected by AD with
200,000 affected under the age of 65 years
• People with DS are part of the 200,000 affected by
AD.
• Estimated 6% of adults with an ID will be affected
by dementia. Percentage increases with age.
• Adults with DS, 25% will be affected by AD after the
age of 40 and at least 50-70% by age 60.
Zigmam WB, Schupf N, Devenny D, et al (2004); National Down Syndrome Society.
http://wwwndss.org/index.php?option=com_content&view=article&id+180showall=1
Alvarez N (2011)
Risk Factors
• Adults with DS
– Average age of onset – 52 years
– Early onset dementia – 40 years
– Average age of death, after they reach 40 is 56
years of age.
– Illness duration (life expectancy after recognized
disease onset is 5-8 years)
– For general adult population, 7-20 years.
– Aggressive form of AD
Adults with ID (not DS) and Dementia
• Similar prevalence of dementia
• Affected by same types of dementia as general
population
• Average onset is late 60s
• Symptom presentation is similar
National Task Force on IN and Dementia Practices,
2012
NTG – 9-step Approach
• STEP 1 – Gather a Pertinent Medical and
Psychiatric History
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History of cardiovascular disease
History of cerebrovascular disease
Underlying structural abnormalities
History of head injury, concussion, or LOC
Poorly treated sleep disorders
Thyroid disease
Vitamin B12 deficiency
Metabolic syndrome (obesity, DM, HTN)
Moran et al, 2013
Reversible causes presenting as
cognitive impairment
• Adults with DS are susceptible to
– Early changes due to aging – cataracts,
hypothyroidism, unreported pain
(arthritis/constipation) reduced hearing and
vision, anemia
– Other factors: depression, dehydration, poor
nutrition, lack of sleep, social isolation,
medications
Moran et al, 2013
NTG- 9-Step Approach
• STEP 2 – Obtain a Historical Description of
Baseline Functioning.
– Description is highly dependent on the historian
– NTG Early Detection Screen for Dementia Tool
• Not assessment or diagnostic tool
• Administrative Screen that can be used by family and
CG to note functional decline and health problems and
record to help contribute to history
• It is recommend this tool be used annually starting at
age 40 in adults with DS.
• See handout
Moran et al, 2013
STEP 2 – Obtain a Historical Description of Baseline Functioning.
• Track trajectories of functional and cognitive
decline- Surveillance strategies
• In persons with DS, baseline measurements
should begin at 40 years of age.
• Older adults with other etiologies of ID should
have baseline measurements starting in their 50s.
How do you determine a change in baseline?
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Change in routine behavior
Steady decrease in ADL
Personality change
Loss of learned skills
Loss or decline in learning new skills or
information
• Reduced cognitive function
• Loss of social or job skills
• Withdrawal from past pleasurable activities
A very helpful tool
NTG- 9-Step Approach
• STEP 3 – Obtain a Description of Current Functioning
and Compare with Baseline
– Intellectual disabilities involve undeveloped or under
developed mental or intellectual skills and abilities
– Description is highly dependent on the historian
– NTG Early Detection Screen for Dementia Tool
• Not assessment or diagnostic tool
• Administrative Screen that can be used by family and CG to note
functional decline and health problems and record to help
contribute to history
• It is recommend this tool be used annually starting at age 40 in
adults with DS.
• See handout
Moran et al, 2013
NTG 9-Step Approach Step 4 - ROS
System
Specific ? Or symptoms
Constitutional
Does the patient typically reliably report pain?
Any reports of pain or nonverbal signs of underlying
reported pain?
HEENT
Focus on vision, hearing and dental
Gastrointestinal
N/V, C, D, abdominal pain or heartburn; Weight changes
Dysphagia or choking
Pulmonary
h/o sleep disorders; Review sleep patterns: fragmented
sleep, difficulty arousing, daytime somnolence, napping
Neurologic
H/A, weakness, change in voice, change in sensation
Trouble walking, balance problems, coordination
problems, tremor
Any recent falls-descriptive details
Past seizure history, date of last seizure
Staring spells or confusional episodes
Behavior changes, drooling, incontinence
NTG 9-Step Approach: Step 5-Review
meds
• Polypharmacy
• Multiple prescription from multiple physicians
• Psychoactive, antiepileptic or anticholinergic, and
those with sedating properties
• Confusion, somnolence, gait instability and/or
urinary retention.
• http://www.pharmacist.com/beers-reviseddrugs-not-use-older-adults
(Moran et al, 2013)
Common Medication Classes Associated With Possible Worsening of Cognitive Function
in Patients With Dementia (Moran et al, 2013)
Medication class
Examples
Comments
Antihistamines,
Diphenhydramine Anticholinergic AE- urine retention,
especially first generation Hydroxyzine
confusion, sedation
I.
Promethazine
Bladder agents
Oxybutynin
Anticholinergic AE - urine retention,
Tolterodine
confusion, sedation
Certain pain medications Meperidine
Meperidine: ↑ risk of seizures with RI
Propoxyphene
Tricyclic antidepressants Amitriptyline
Risks and benefits of this medication class
Clomipramine
should be guided by a psychiatrist with
Doxepin
familiarity with patients with I/DD
Certain antipsychotics
Chlorpromazine Sedation, mental sluggishness. Atypical
Clozapine
AP have been associated with ↑
Pimozide
mortality when used to treat behavioral
problems in elderly patients with
dementia, no such studies have been
conducted in DS or I/DD in general
Long-acting
Clonazepam
Very sedating; caution for gait
benzodiazepines (BZD)
Temazepam
impairment, dizziness
NTG 9-Step Approach: Step 6
• Obtain a Pertinent Family History
– H/O cerebrovascular disease, CVD, DM, RA or SLE
in first degree relatives
– H/O dementia in first degree relative
– Was the presentation early onset
• Younger than 50 years of age, except in adults with DS
NTG 9-Step Approach- Step 7
• Assess for Other Psychosocial Issues or
Changes
– Destabilizing Life Events
– Limiting coping skills or emotional maturity can
have a huge impact on their health and well being
– Psychiatric illness may present atypically in adults
with IDD
– Diagnostic Manual 5 – Intellectual Disability is
helpful
– http://www.medscape.com/viewarticle/782769
NTG 9-Step Approach
• Step 8 - Review Social History, Living
Environment and Level of Support
– Evaluation of safety in light of a possible dementia
diagnosis
– Appropriateness of the potential placement
• Step 9 – Synthesize all the information in
context
Key Areas - Physical Examination as it relates to
a dementia diagnosis
Body Area
Assessment
Eyes
Fundoscopic assessment for cataracts, assessment for eye disease
Ears
Otoscopic assessment for cerumen impaction, underlying middle
ear concerns, gross hearing test (whisper, finger rub)
Oral/Dental
Assess for gross signs of dental disease and sources of unreported
pain or discomfort
Thyroid
Assess for enlargements or nodules
Abdominal
Assess for signs of constipation, reproducible pain, distended
bladder
Musculoskeletal
Assess for contractures, crepitus, ROM deficits, valgus deformities,
or any other underlying sources of pain or discomfort
Back
Assess for kyphosis, ROM deficits, bony tenderness
Neurologic
Assess for focal deficits (peripheral neuropathy), frontal release
signs, rigidity, cog wheeling, apraxia, aphasia, agnosia or anomia
Gait
Assess for instability, poor safety awareness, and other gross
mobility deficits
Diagnosing
• Eliminate confounding co-morbid variables
• Laboratory work ups and neuroimaging
• Other testing: ophthalmology testing, cerumen
disimpaction, audiology testing, sleep studies,
consideration of antidepression drug trial, EEG,
Echocardiogram, and ECG (arrhythmia)
• Review the older adults ADLs and find evidence of a
progressive loss of function
Common Contributors to Memory Changes in
Adults with IDD
Condition
Presentation
Sensory deficits
Hearing loss, vision loss
Metabolic
disturbances
Electrolyte abnormalities; hypo or hyperglycemia; B12 or folate
deficiencies; undetected thyroid abnormalities, anemia, toxic
levels of antiepileptic or psychoactive medications; toxic AE of
certain medications
Coexisting mood Either newly detected or subacute worsening of baseline mood
disorder
disorders; depression
Medications
Polypharmacy
Sleep problems
OSA or other undetected sleep d/o
Seizures
Undetected or worsening seizure d/o
Pain
Undiagnosed pain or undertreated pain
Mobility
Mobility d/o and loss of functionality
Psychosocial
environment
Change in routine, death of family member or friend, reactions
to a threatening situation, change in home/workplace
Dementia Treatment
• Pharmacologic
-Between 1999-2013: there were 5 cholinesterase
inhibitor drug studies with individuals with DS with or
without dementia.
*The total sample size for all 5 studies n=84
*2 were RCT which demonstrated nonsignifcant
improvements; improvement in language
*2 were case controls one showed significant
improvement the other did not
*1 case report demonstrated language improvement
Therapeutics
• Treat diagnosed medical conditions
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Vision/Hearing problems
Hypothyroidism
Seizures
Dental disease etc.
• Treat co-existing mental disorders
– Depression
– Psychosis
• Review of medications at every visit
– Polypharmcy
Interprofessional
• Critical
• OT and PT consults for nonpharmacologic
management of dementia
• Social work, Recreational Therapist, Nursing,
Medicine - all team members who touch the
older adult’s life can provide care through
communication, environmental and
behavioral strategies
Disease Progression
• Increased need for caregiver support
– Reduction in personal care skills
– Reduction in mobility function (walking, sitting)
– Increase in dysphagia
– Loss of bowel and bladder control
• Increased risk for
– Seizures
– Infections
– Pressure Ulcers
Key Summary
• Early identification is crucial.
– Beginning at age 50 for adults with ID
– Age 40 for adults with DS and others at early risk
• Commitment to living in the community.
• Education is what is missing.
– Training and education to prepare the workforce
for the aging adult with IDD and dementia care.
The Fatal Four (Smith & Escude, 2015)
• Four major medical conditions seen among
individuals with IDD that can lead to serious
medication complications:
– Constipation
– Aspiration
– Dehydration
– Seizures
Constipation (Smith & Escude, 2015)
Medical Model
What to look for…
Common Presenting symptom
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Decreased bowel sounds; vomiting
Abdominal bloating and rigidity
Fever, seizures
Behavioral outbursts
Assessment Findings
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Fever
Anorexia. vomiting
Pneumonia
Seizures. Decreased LOC
Behavioral outbursts
Potential Complications
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Always consider the possibility of bowel obstruction
Death
Diagnostics
Chemistry panel, CBC, Flat and upright X-ray abdomen; Useful tests that
may not be well tolerated in patients with IDD: CT, MRI, U/S
Treatment
Daily medications (laxatives, stool softeners, suppositories), manual
modalities (enemas, disimpaction)
Prevention
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Diet modifications: increased fiber intake, promotion of adequate fluid
intake
Various agents: bulking agents, softening agents, osmotic agents
Aspiration (Smith & Escude, 2015)
Medical Model
What to look for…
Common Presenting symptom
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Coughing after swallowing food or liquids
Recurrent pneumonia, reactive airway disease
Fever, burping, hoarseness, decreased appetite, SOB
Changes in RR, cyanosis, recurrent wheezing, halitosis
Excessive sweating, colored sputum
Assessment Findings
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Fever, abnormal breath sounds,
Decreased oxygen saturation, tachycardia
Altered mental status
Potential Complications
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Development of aspiration pneumonia or sepsis
Development of acute respiratory distress syndrome
Respiratory arrest and/or Death
Diagnostics
CBC, ABG, Blood cultures, sputum cultures, Chest X-ray; CT Chest,
Bronchoscopy
Treatment
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Antibiotics
Hospitalization and ventilation support (severe cases)
Inpatient vs.. outpatient treatment for pneumonia –Use CURB-65
calculator http://www.mdcalc.com/curb-65-severity-score-communityacquired-pneumonia/
Prevention
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Swallowing/feeding evaluation – individualized plan
Dehydration (Smith & Escude, 2015)
Medical Model
What to look for…
Common Presenting symptom
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Hypotension, dry mouth, decreased skin turgor
Delayed capillary refill, tachycardia, seizures
Reflag CV collapse: Low BP, Shallow breathing, weak pulse, clammy skin,
cyanosis, low urine output, unconsciousness
Assessment Findings
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See above
Potential Complications
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Alteration in electrolytes
Death
Diagnostics
CBC, Complete metabolic panel
Treatment
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Fluid and electrolyte replacement
IV fluids for severe dehydration
Hospitalization for symptoms of CV collapse
Prevention
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Fluid management from nutritional need perspective
Recognize situations where older adults have potential for dehydration
and increase fluid intake if indicated : hot weather, fever, diarrhea,
elevated blood glucose, vomiting.
Seizures (Smith & Escude, 2015)
Medical Model
What to look for…
Common Presenting symptom
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Dependent on the type of seizure
Generalized
Partial
Assessment Findings
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Dependent on the type of seizure
Potential Complications
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Bodily injury
Death
Diagnostics
Depends on new onset versus recurrent seizure profile
• New onset- EEG, CBC, stat glucose, CMP, ?CT/MRI of brain
• Known- without change in pattern/presentation – no work up needed
• Change in seizure pattern – consider constipation, medication changes,
shunt malfunction, infection, hypoglycemia
• Educate all around about the need for accurate log of seizure activity
Treatment
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R/0 precipitating factors
Determine pharmacologic path
Prevention
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Avoid or prevent precipitating factors such as constipation or
hypoglycemia
Early treatment of infections (UTI, respiratory, skin)
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Resources -Dementia
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Alzheimer’s Association (www.alz.org)
Alzheimer’s Research Foundation (www.alzinfo.org)
American Geriatric Society (www.americangeriatrics.org)
NIH – Funded Clinical Research Centers
(www.nia.nih.gov/Alzheimers)
Family Caregiver Support Network
(www.caregiversupportnetwork.org)
Family Caregiver Alliance – National Center on Caregiving
(www.cargiver.org/caregiver/jsp/home.jsp)
National Family Caregiver Support Program
(www.aging.carefl.org/services/programs/NationalSupport)
Caring Connections (www.caringinfo.org)
Resources – Aging and IDD
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Guidelines for Structuring Community Care and Supports for People With
Intellectual Disabilities Affected by Dementia
http://aadmd.org/sites/default/files/NTG_Guidelines-posting-version.pdf
• Bridging the Aging and Developmental Disabilities Service Networks:
Challenges and Best Practices
(www.acf.hhs.gov/sites/default/files/aidd/bridgingreport_3_15_2012.pdf)
• Moran JA, Rafii MS, Keller SM, S BK, & Janicki MP. The National Task
Group on Intellectual Disabilities and Dementia Practices Consensus
Recommendations for the Evaluation and management of Dementia in
Adults with Intellectual Disabilities
• Primary Care of Adults With Developmental Disabilities — Canadian
Census Guidelines www.cfp.ca/content/57/5/541.full.pdf
References
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Alvarez N. Alzheimer’s Disease in Down Syndrome. Medscape Reference: Drugs,
Diseases and Procedures. 2011.
http://emedicine.medscape.com/article/1136117-overview#aw2aab6b4aa
Borson S, Frank L, Bayley PJ et al. Improving dementia care: the role of screening
and detection of cognitive impairment. Alzheimer Dement. 2013:9(2):151-159.
Carmeli E, Iman B. Health promotion and disease prevention strategies in older
adults with intellectual and developmental disabilities. Frontier Public Health,
2014 2(31): doi 10.3389/pubh.2014.00031.
Hanney M, Prasher V, Williams N. et al. memantine for dementia in adults older
than 40 years with Down’s syndrome (MEADOWS): a randomized double-blind,
placebo-controlled trial. Lancet.2012:379 (9815): 528-536.
Heller T, Stafford P, Davis LA, Sedlezky L, & Gaylor V (eds) (Winter 2010). Impact:
Feature Issue on Aging and People with Intellectual and Developmental Disabilities,
23(1).
Jokinen N, Janicki MP, McCallion P, et al. Guidelines for Structuring Community
Care and Supports for People with Intellectual Disabilities Affected by Dementia.
Journal of Policy and Practice in Intellectual Disabilities, 2013 10(1):1-24.
References (2/2)
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Merrick J, Morad M, & Carmeli E. Intellectual and Developmental Disabilities: Male Health 2014.
Frontiers in Public Health 2 (208):1-6. doi: 10.3389/fpubh.2014.00208
National Down Syndrome Society.
http://wwwndss.org/index.php?option=com_content&view=article&id+180showall=1
Mohan M, Carpenter PK, Bennet C. Donepezil for dementia in people with Down syndrome.
Cochrane Database Syst Rev. 2009; (1): CD007178.
National Task Group on Intellectual and Disabilities and Dementia Practice. (2010). ‘My Thinker’s
Not Working’: A national Strategy for Enabling Adults with Intellectual Disabilities Affected by
Dementia to Remain in Their Community and Receive Quality Supports.
www.aadmd.org/ntg/thinker. www.rrtcadd.org/ www.aaidd.org
Smith MA & Escude CL. Intellectual and Developmental Disabilities. The Clinical Advisor. 2015:4959.
Tinglin CC. Adults with Intellectual and Developmental Disabilities: A Unique Population. Today’s
Geriatric Medicine 2014 6(3): 22-25.
Zigman WB, Schupf N, Devenny D, et al. Incidence and prevalence of dementia in elderly adults
with mental retardation without Down Syndrome. American Journal on Mental Retardation,
2014:109:126-141.