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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 • • • • 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 • • • • • • • 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 • • • • • Menopause Osteoporosis Heart disease Cancer risk Urinary incontinence Functional Assessment • Utilizing functional age rather than chronologic age is much more appropriate • Assessment of function - 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: – – – – – 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 – – – – – – – – 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? • • • • • 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 – – – – 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 • • • • Decreased bowel sounds; vomiting Abdominal bloating and rigidity Fever, seizures Behavioral outbursts Assessment Findings • • • • • Fever Anorexia. vomiting Pneumonia Seizures. Decreased LOC Behavioral outbursts Potential Complications • • 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 • • 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 • • • • • 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 • • • Fever, abnormal breath sounds, Decreased oxygen saturation, tachycardia Altered mental status Potential Complications • • • 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 • • • 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 • Swallowing/feeding evaluation – individualized plan Dehydration (Smith & Escude, 2015) Medical Model What to look for… Common Presenting symptom • • • 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 • See above Potential Complications • • Alteration in electrolytes Death Diagnostics CBC, Complete metabolic panel Treatment • • • Fluid and electrolyte replacement IV fluids for severe dehydration Hospitalization for symptoms of CV collapse Prevention • • 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 • • • Dependent on the type of seizure Generalized Partial Assessment Findings • Dependent on the type of seizure Potential Complications • • 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 • • R/0 precipitating factors Determine pharmacologic path Prevention • Avoid or prevent precipitating factors such as constipation or hypoglycemia Early treatment of infections (UTI, respiratory, skin) • Resources -Dementia • • • • • • • • 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 • 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 • • • • • • 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) • • • • • • • 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.