elizabeth a. perkins, phd, rnld, faaidd, fgsa

Rutgers, The State University of New Jersey Liberty Plaza, 335 George Street, New Brunswick, NJ 08901

rwjms.rutgers.edu/boggscenter p. 732-235-9300 f. 732-235-9330

Elizabeth A. Perkins, PhD, RNLD, FAAIDD, FGSA

Associate Director and Research Associate Professor Florida Center for Inclusive Communities

University of South Florida Tampa, FL

Promoting Health, Wellness, and Contentment in Older Adults with Developmental Disabilities

and their Aging Caregivers

October 26, 2017 DoubleTree Suites by Hilton, Mt. Laurel, NJ

The attached handouts are provided as part of The Boggs Center’s continuing education and dissemination activities. Please note that these items are reprinted by permission from the author. If you desire to reproduce them, please obtain permission from the originator.

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Promoting Health, Wellness, and Contentment in Older Adults with Developmental Disabilities

and their Aging Caregivers

Presented byLiz Perkins PhD RNLD FAAIDD FGSA

Research Associate Professor & Associate DirectorFlorida Center for Inclusive Communities/UCEDD

October 26, 2017 – Mt. Laurel, New Jersey

Overview

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What will be covered:

• A few aging statistics, life span, and life expectancy• General health disparity issues• The aging process, successful aging, universal physical changes, modifiable

versus unmodifiable factors for successful aging• Specific health/aging issues in people with Down syndrome, people with

cerebral palsy, and people with autism• Optimizing the aging process• Consideration of caregiver challenges• Useful resources

Goal: To increase participants’ knowledge of the aging process, and sensitivity to caregiving issues, in order to increase their capacity to promote successful aging in older adults with IDD.

Lea Castle Hospital – England.

Registered Nurse Learning Disabilities (RNLD) Training

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* http://www.whitehouseconferenceonaging.gov/about/statistics.html^ http://www.who.int/world‐health‐day/2012/toolkit/background/en/

USA 2013 ‐ 44.7 million aged 65 +, 6 million aged 85+

Within the next 50 years:65+ popn will double to 92 million. *85+ popn will triple to 18 million. *

14.1% are 65+, 21.7% will be by 2040.

Retirement of Baby Boomers (b. 1946‐1964) between 2011‐2029 10,000 reach age 65 everyday!*

Globally, by 2017, first time in human history, the 65+’s will outnumber children up to age 5. ^

Aging Statistics

Change in Population Pyramids

https://populationpyramid.net/united‐states‐of‐america/

Population above black line is aged 65+

“The number of adults with I/DD age 60 years and older is projected to nearly double from 641,860 in 2000 to 1.2 million by 2030.”

Heller, T. (2010). People with intellectual and developmental disabilities growing old: An overview. Page 2 – from

Heller, T., Stafford, P., Davis, L.A., Sedlezky, L., & Gaylord, V. (Eds.). (Winter 2010). Impact: Feature Issue on Aging and People with Intellectual and Developmental Disabilities, 23(1). [Minneapolis: University of Minnesota, Institute on Community Integration].

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Where Do People with IDD Live - USA?

Chart/Data from www.stateofthestates.org

Where Do People with IDD Live - NJ?

http://stateofthestates.org/documents/NewJersey.pdf

USA

15%Chart/Data from www.stateofthestates.org

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NJ

5%http://stateofthestates.org/documents/NewJersey.pdf

USA

Chart/Data from www.stateofthestates.org

NJ

http://stateofthestates.org/documents/NewJersey.pdf

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b. 21st Feb 1875

d. 4th August 1997

Age: 122 years,164 days

Lifespan: Meet the Oldest Person who has ever lived…. Jeanne Calment

“Always keep your smile. That's how I explain my long life!”

“Every age has its happiness and troubles.”

From Lifespan to Life Expectancy

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Medical advancements increased life expectancy

New research findings, treatments, health promotion, and education

better disease prevention

longer healthy life expectancy

Fries J. F. (1980). Aging, natural death, and the compression of morbidity. New England Journal of Medicine, 303, 130-5.

Fries, J. F. (2000). Compression of morbidity in the elderly. Vaccine, 18, 1584-89.

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US Overall 79.8 years*Ranks 42rd internationally.

Highest LE:Hispanic females 83.7 years

Lowest LE:Black males71.7 years

* https://www.cia.gov/library/publications/the‐world‐factbook/rankorder/2102rank.html

Life Expectancy at Birth, by Sex and Race/Ethnicity – United States, 2016 est.

Level of Intellectual Disability

(Data from Bittles et al., 2002)

Age

Life Expectancy in People with Intellectual Disabilities

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“People with ID now live longer than previously expected, and the aging of people with mild ID appears to be equal to that of the general population, posing new challenges to health care professionals.”

(Patja et al., 2010)

Life Expectancy: People with Down Syndrome

• In early 1900’s life expectancy was 9 years. (Selikowitz, 1992).

• Median life expectancy between 1983 ‐1997 increased by 24 years, from 25 to 49 years, 8x the national life expectancy increase. (Yang, Rasmussen & Freidman, 2002).

• As with the general population, ethnicity can impact life expectancy (Yang, Rasmussen & Freidman, 2002).

• Life expectancy is approx 60 years (Bittles et al., 2002).

• Possibly oldest person ever was Joyce Greenman, 87.

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Bert Holbrooke. Oldest man ever with DS – died aged 83.

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Life Expectancy: People with Cerebral Palsy

Life expectancy (additional years) by age and cohort

Current

Age

Cannot lift head Lifts head or chest Rolls/sits, cannot walk Walks unaided

Gen popn

TF FBO TF FBO TF FBO SF

Female

15 13 16 16 21 21 35 49 55 65.8

30 14 20 15 26 16 34 39 43 51.2

45 12 14 13 16 14 22 27 31 37.0

60 – – – – – – 16 20 23.8

Male

15 13 16 16 20 19 32 45 51 60.6

30 14 19 15 24 16 31 35 39 46.5

45 12 14 13 15 14 20 23 27 32.8

60 – – – – – – 13 16 20.4

TF = tube fed; FBO = fed by others, without feeding tube; SF =self‐feeds.

(Strauss, Brooks, Rosenbloom, & Shavelle, 2008).19

What is Good Health?

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Health is a state of complete physical, mental, and social well‐being and not merely the absence of disease or infirmity.

Health Disparities for People with Disabilities

Disability ≠ illness, however having a disability does increase risk of other health conditions.

– 87% of persons with a disability report at least one secondary condition

– 49% of those people without a disability report at least one secondary condition

– People with disabilities report an average of 4 conditions whereas people without disabilities report just over 1.

(mean = 4.02 vs 1.28).(Kinne et al., 2004).

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Common Secondary Conditions• Chronic pain in

muscles/joints

• Sleep problems

• Extreme fatigue

• Weight gain/eating problems

• Skin problems

• Depression

• Anxiety

(Kinne et al., 2004).

Remember: Health is a state of complete physical, mental, and social well‐being and not merely the absence of disease or infirmity.

• Respiratory infections

• Falls and other injuries

• Bowel/bladder problems

• Muscle spasms

• Asthma

• Social isolation

• Lack of romantic relationships

• Lack of friendships

• Lack of community engagement

Population Differences Between People with and Without Disabilities, Behaviors, Status, and Social Determinants

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Krahn, G. L., Walker, D. K., & Correa‐De‐Araujo, D. (2015). Persons with disabilities as an unrecognized health disparity population. American Journal of Public Health, 105, S198‐S206.

Health Indicator With Disabilities (%)

Without Disabilities (%)

No leisure time activity 54.2 32.2

Obese 44.6 34.2

Current Smoker 28.8 18.0

# with new dx diabetes (per 1000) 19.1 6.8

Adults 45‐64 with Cardio Vascular Disease (per 1000)

27.7 9.7

Have Adequate Social/Emotional Support 70.0 83.1

Internet Access 54 84

Household Income <$15,000 34 15

Inadequate Transportation 34 16

(Self‐Rated Health Status Among Adults With and Without Disabilities ‐‐ United States, 2004 ‐2006;CDC, 2008)

Self- reported health highlights disparities.

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Poor Health Outcomes CDC ‐White Paper 2009 “US Surveillance on Health of People with

Intellectual Disabilities”. Highlighted disturbing disparities. Persons with ID are a particularly vulnerable population. More likely to..............

• Live with complex health conditions

• Have limited access to quality healthcare/health prevention programs

• Miss cancer screenings

• Have poorly managed chronic conditions, eg. epilepsy

• Be obese

• Have undetected poor vision

• Have mental health problems

Individual Aging Process

Susceptibility to disease

Universal physical changes (reduced efficiency/capacity of

organ systems, loss of muscle/bone mass etc.)

Social and cultural factors(e.g. quality of social network, family cohesiveness)

Compensatorybehaviors + access to

resources (e.g. healthcare)

Lifestyle

Genetic profile

Gender

The Diversity of the Aging Process

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Aging with lifelong disability & comorbidity

Health disparities

Aging is not a disease, does not mean disease, and does not automatically include disease.

Many abnormal changes associated with aging can be prevented or slowed enough to not be problematic until extreme old age.

Diversity of the Aging Process

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Successful Aging

Avoidance of disease and (aging-related) disability (i.e. physical)

Maintaining high physical and cognitive function (i.e. mental)

Sustained engagement in social and productive activities (i.e. social)

Rowe, J.W., & Kahn, R. L. (1997). Successful aging. The Gerontologist, 37(4), 433-440.

Rowe and Kahn defined successful aging as multidimensional:

Physical Change and Aging

• Each body system (cardiovascular, digestive, etc..) is designed to have reserve capacity.

• With increasing age – there is decline in the capacity/efficiency of cells/body systems.

• Overall the body ages remarkably well – though some systems do decline quicker than others, and our lifestyle choices can greatly influence how we experience the aging process.

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Osteopenia ‐ aging‐related bone lossOsteoporosis “porous bones” – weakened and brittle, greatly increases risk of fractures.

Caused by:

Reduction in estrogen (especially in post‐menopausal women).

Reduced calcium intake/absorption/reduced vitamin D.

Lack of exercise, heavy drinking, smoking, prolonged use of certain medications, (e.g. steroids, anti‐anxiety, anti‐depressants).

Universal Physical Changes

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Osteopenia/Osteoporosis – higher prevalence than general popn ‐ extra caution for people with IDD.

• Nutrition issues (eg. food sensitivities or intolerances, may result in inadequate levels of dietary calcium/vitamin D across the life course).

• Lifelong use of medications to treat associated conditions (e.g. epilepsy) and behavioral/mental health issues that are associated with accelerating bone loss.

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Sarcopenia – progressive loss of muscle mass during adulthood.

Caused by:

Slowing metabolismReduction in testosterone/growth hormoneReduced protein intake/inadequate calorie intakeIncreasingly sedentary lifestyle

Results in:

Loss of elasticity/flexibilityLoss of muscle strengthEfficiency of the heart is reducedIncrease in slowness of movement/frailty


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Sarcopenia – extra caution for people with IDD

• Increased risk due to lifelong hypotonia (reduced muscle tone)

• Nutrition issues (e.g. food sensitivity/intolerance, may result in inadequate levels of protein/calcium across the life course).

• Increased risk due to non‐ambulatory status/sedentary lifestyle.

‐ Also problematic is reduced gut motility/increased colonic transit times – chronic constipation, fecal impaction, incontinence as a lifelong issue.

‐ Increased prevalence of dysphagia/oral motor problems are exacerbated with increased age.

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Presbyopia: the lens of the eye becomes stiffer and less flexible –compromises our ability to focus on close objects/text.

Age-Related Changes in Vision

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‐ Ophthalmologists and optometrists can use the technique of dynamic retinoscopy to determine required prescription for lenses.

‐ Usually bifocals need to be positioned higher in the lens, so the individual can look down through the lens without much effort.

‐ Some professionals do not recommend bifocals (trip hazard).

Hearing Loss/Impairment

Presbycusis – aging related change in the ability to detect higher pitches – more noticeable in those age 50+.

• When more severe – can interfere with understanding speech.

• Illness, accidents, and cumulative exposure to environmental noise (loud music/headphones) are all possible factors that can lead to late onset hearing loss.

Hearing impairment/loss are often more prevalent for people with IDD throughout the lifespan compared with general population!

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http://www.freemosquitoringtones.org/

Presbycusis Demo: Hear the difference yourself !

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Taste and Smell

Gustation (i.e. the sense of taste) decrements become more noticeable beyond 60+.

5 receptors ‐ sweet, salt, sour, bitter, and umami (a pleasant savory flavor)

taste receptors + stimulus threshold = food tasting blander

Often older adults may add more salt and sugar ….extra caution for people with ID who may use more of both, without fully comprehending risks that may present (diabetes, hypertension, etc.)

Olfaction (i.e. the sense of smell), decrements become more noticeable after age 70+.

Anosmia loss has also been associated with Alzheimer’s & Parkinson’s disease.

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Touch

• Somatosensory System ‐ detects external touch, but also responsible for experience of pain, temperature, pressure, and one’s awareness of one’s own body position.

• Reduction in sensitivity to pain, touch, temperature, and possible contributing factor to increased risk of falls.

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Detecting Sensory Changes

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Observe behavior change:

Vision: Sitting closer to the tv/other people, apprehensive when walking up and down steps, problems with eating and drinking, dressing (buttons, zips), complaints of blurry vision/difficulty with colors (e.g. cataracts), dislike of being in dark areas.

Hearing: sitting closer to the tv/other people, increasing volume of tv/ipod etc., inappropriate responses to questions, asking people to repeat what they say, not hearing alarm clocks, dislike of parties/restaurants, dislike talking on the phone, complaining about others mumbling.

Taste/Smell: Lack of awareness of strong odors (personal hygiene, incontinence), using extra salt/sugar, flavors tasting different.

Somatosensory: Complaints about temperature (too hot/too cold), not changing position.

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Increased Risk Factors for Falls/Vestibular Disorders

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• Seizures (tonic/clonic)

• History of Falls (e.g. atonic/drop seizures)

• Hypotonia (poor muscle tone)

• Lifelong Gait/Balance Deficit

• Use of Assistive Devices

• Visual Impairment

• Medications (S/E: dizziness, fatigue)

Scissoring gaitWalking on toesInability for feet to clear the floorShufflingCan present greater risk of tripping/stumbling

Proactive Avoidance of Frailty!

Frailty is defined as the presence of 3 of the following 5 phenomena:

• involuntary weight loss • weakness (e.g. poor grip strength)• slow walking speed• self‐reported exhaustion • low physical activity. (Fried et al., 2001).

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Jimmy Jenson, 48.Picture credit: Best Buddies

Amy SharpPicture credit: Jim Mone/AP file

Disability ≠ Inactivity

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Aaron “Wheelz” Fotheringham“Honestly, there’s just wheels

stuck to my butt. How can that not be fun?”

Aaron’s first chair

Disabilities Do Not Define Us!

Expression of Pain• May manifest as aggression towards others

• May manifest in isolating behaviors

• May manifest as change in dietary intake

• May not manifest (high pain threshold)

• May change with increasing age

• Chronic conditions/acute conditions

• May manifest in self‐injurious behaviors

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Polypharmacy

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People with DD need careful attention because:

• Many often have multiple lifelong medical issues, and take many different types of drugs.

• At‐risk for developing aging‐related health conditions. e.g. a person with cerebral palsy, may take drugs for spasticity, epilepsy, GERD, chronic pain, osteoporosis, and develop heart disease, hypertension, and depression in older adulthood.

• Medications may not have been reviewed regularly and adequately, and may continue the use of older drugs with more side effects.

• As with the general population, changes in weight, hydration, adverse drug interactions, can lead to delirium.

Vigilance regarding polypharmacy is especially important,even more so with increasing age!

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Modifiable versus UnmodifiableFactors for Successful Aging

• Age

• Gender

• Genetics

• Ethnicity

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Unmodifiable

• Eat a balanced and healthy diet (and supplements)

• Maintain a healthy weight

• Regular exercise (include weight bearing exercises)

• Manage stress / allow time for relaxation ‐

• Don’t smoke (and avoid secondary smoking!)

• Education (promote lifelong learning)

• Occupation (esp. promotes curiosity, or working with people)

• Leisure activities (mental, social, physical – novelty, variety, and challenge)

• Enriching relationships (evolving)

• Living in a nurturing/clean physical environment

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Modifiable

Modifiable versus Unmodifiable Factors for Successful Aging

Comprehensive Geriatric Assessment

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Source: http://www.hkma.org/english/cme/onlinecme/cme200501main.htm

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Use it or Lose it!

Aging/Health Issues in People with Down Syndrome

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General features of DS: Hypotonia, hyperextensive joints, smaller stature (average height = 5ft men, 4ft 9in women), flattened occiput, poorly developed bridge of nose, small mouth, high arched palate, lack of lysozyme in tears (recurrent conjunctivitis and blepharitis).

Many are born with congenital heart defects (30‐50%), ~ 10% have intestinal abnormalities.

Increased risk of Hypothyroidism, Diabetes, Epilepsy, Sleep Apnea, Leukemia, Lymphoma, Testicular cancer, Liver cancer, and Atlantoaxial instability (atlas ‐C1 and axis ‐ C2), Compromised Immune System, Gingival hyperplasia, and periodontal disease.

Mental health: increased risk of Anxiety, Obsessive Compulsive Disorder, Depression

Most people with DS have mild to moderate intellectual disability.

Down Syndrome – Hearing/Vision issues

• Myopia, hyperopia, nystagmus, strabismus, amblyopia are more common than in general popn. Prone to early onset cataracts.

• Often develop conductive hearing loss due to frequent ear infections in childhood.

• Prone to excessive production of ear wax and oftentimes have narrow ear canals. Impacted wax.

• The hair cells of the cochlear may be missing, causing congenital deafness, or simply prone to early degeneration leading to sensorineural hearing loss.

• People with DS may experience a more progressive, earlier onset hearing loss, generally starting in the early twenties.

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Epilepsy prevalence rates increase with age –~ 10% children have epilepsy ~ 50% adults aged 50 +

partial seizures (47%), infantile spasms (32%) or generalized tonic‐clonic seizures (21%).

Late Onset Seizure Disorder:Often associated with the development of Alzheimer’s Disease‐ Late Onset Myoclonic Epilepsy in Down’s syndrome (LOMEDS)Osteoporosis ‐ lower bone mass density than non‐DS popn –

contributing factors, sedentary lifestyle, hypotonia, endocrine dysregulation ‐ affecting bone renewal cycle.

Osteoarthritis from hyperflexibilityPremature menopause (44 versus 52 in general popn), also

associated with increased risk of Alzheimer’s disease.Celiac Disease

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Other Aging/Health Issues in People with Down Syndrome

Down Syndrome & Alzheimer’s Disease

Well‐established that all people with DS develop the neuropathological lesions associated with AD.

Amyloid plaques, neurofibrillary tangles, are present by age 40, though not all people with DS will develop AD.

Beta Amyloid is derived from Amyloid Precursor Protein, on Chromosome 21 –thus there is over‐expression of APP, linked with higher prevalence of AD in people with

DS at younger ages.

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https://www.alz.org/documents_custom/2017‐facts‐and‐figures.pdfSource:

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Alzheimer’s Disease (AD)Prevalence in General Population

• Over age 65 ‐ 10.3% have AD• Over age 85 ‐ 47.2% have AD• Average age of onset = 72 years• Course – 10 years usually, up to 20 years

People with Down syndrome• Over age 60 – 56% have AD• Average age of onset = 52 years• Course – often shorter ~ 5 years

IMPORTANT – Other etiologies of ID are generally similar to that of thegeneral population.

National Task Group on Intellectual Disability and Dementia Practices http://aadmd.org/NTG

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Alzheimer’s Disease

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Bishop, K., Hogan, M., Janicki, M. P., Keller, S., Lucchino, R., Mughal, D., Perkins, E. A., Singh, B. K., Service, K., Wolfson, S., and the Health Planning Work Group of the National Task Group on Intellectual Disabilities and Dementia Practices. (2015).

Guidelines on health care advocacy for adults with intellectual disabilities and dementia of the National Task Group on Intellectual Disabilities and Dementia Practices.

National Task Group on Intellectual Disability and Dementia Practices http://aadmd.org/NTG

Download direct http://aadmd.org/sites/default/files/Bishop‐document‐web.pdf

.

Email [email protected] for pdf of the formal article

Assessment Difficulties in People with IDD and Suspected Dementia

Reliance on informant-provided information

Residential facility – staff (turnover)

Lack of training and vigilance to detect subtle behavior

changes (both staff and older caregivers)

Divergent reports arising from context

Sensory Impairments - Can impact assessment and are more

prevalent in the ID population.

Clinical Instruments – Many of the scales used to screen for

presence of dementia in general population are not

appropriate for people with IDD.

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NTG - Early Detection Screen for Dementia in People with ID

http://aadmd.org/sites/default/files/NTG‐EDSD‐ElectronicForm‐9%271%2716‐pdf%20%281%29.pdf

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John Stoklosa, 33 is a champion weightlifter. World Champion Special Olympics athlete in 1999, he now competes in regular competitions.His PB is a 402lb bench press!!!

Madeline Stuart, 18 – lost 40lbs to become a model.

Was one of the first models with DS to appear on the runway for New York Fashion Week!

Challenge Expectations Now for Healthier Futures!

Mikayla Holmgren, 22 is aMiss Minnesota USA contestant – has become the first to compete in the state pageant, and as far as officials know, the first in the country.

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CP is a group of permanent movement disorders that appear in early childhood.

Most common type: Spastic

Cerebral Palsy

Hypertonia: Tense, contracted muscles

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Cerebral Palsy

Choreo‐Athetoid Ataxic

Hypertonia and hypotonia:Constant uncontrolled motion of head, eyes, and limbs.

Poor coordination, poor balance, often causing falls.

Data from CDC http://www.cdc.gov/ncbddd/cp/data.html

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Dynamic movement orthotics

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Assistive Technologies: Head Switch Control

Augmented Communication

Aging/Health Issues in People with Cerebral Palsy

Issues that are present across the lifespan and can become more problematic with increasing age.

• Motor function changes in mobility, strength, and endurance• Increased risk of osteopenia, osteoporosis, (exacerbated by medication),

fractures, and osteoarthritis esp. from athetoid movements• Decline in functional abilities (ADLs/IADLs), that can manifest in middle‐

age. • Bowel and bladder dysfunction• Respiratory compromise & infections• Oral health problems• Gastroesophageal reflux• Increasing difficulty with chewing/swallowing)• Chronic pain and stiffness (concern that it is often under‐reported/dx/tx)

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“When I was born almost 65 years ago, Iunexpectedly survived but then failed to develop asmy grandmother kept saying I should.

No one could tell my parents what to expect. In my fifties when I began to sense changes in my ability to do things I had always done, again no one could tell me what to expect as I aged with cerebral palsy.”

Source of quote: http://www.rrtcadd.org/resources/Resources/Topics‐of‐Interest/CP/future.pdf

Aging/Health Issues in People with Cerebral Palsy

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Pharmacological:To control seizures, alleviate pain, or relax muscle spasms (e.g. baclofen and intrathecalphenol/baclofen); Botox to treat contractures

Orthopedic surgeries:To correct anatomical abnormalities or release hypertonic muscles.

Orthotics:braces/orthotic devices; rolling walkers; custom fit seating/wheelchairs.

Historically: poor positioning increased severity of contractures

.

Aging with CP: Age is not always a barrier for improved posture and ambulation

Paul Smith - Typewriter Artist

Paul’s art required pre‐planning, roller adjustments, ribbon changes, and shading techniques. He pressed his thumb against the ribbon to create the shading on the paper.”

“Paul’s images, were created with symbol keys – !, @, #, %, ^, _, (, &, ) – etc. that were accessible along the top row of his typewriter keyboard…

b. 9/21/1921 d. 6/25/2007

Check out for yourself! https://www.youtube.com/watch?v=svzPm8lT36o

Aging/Health Issues in Autistic People

Autism Spectrum Disorders (1 in 68)

2 cardinal characteristics

‐ Impairment in social‐communication and interaction

‐ Restricted repetitive and stereotyped

patterns of behavior, interests and activities.

~ 40% have Intellectual Disability

~ 40% have Epilepsy

More common in males than females by ~ 4 : 1 ratio

Perkins, E. A. & Berkman, K. A. (2012). Into the Unknown: Aging with Autism Spectrum Disorders.

American Journal on Intellectual and Developmental Disabilities, 117, 478‐496.

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Special Issue on Aging and End Of Life, American Journal on Intellectual and Developmental Disabilities (2012).Guest EditorsElizabeth Perkins & Sandra Friedman

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Associated Conditions with AutismCondition Features

Gastrointestinal Primarily diarrhea and constipation. Associated with daytime behavioral problems.

Sleep Disorders Insomnia very common, associated with daytime behavioral problems. Includes circadian rhythm disturbance and periodic limb movements.

Motor impairments Includes hypotonia, apraxia, clumsiness, toe walking, gross motor delay.

Psychiatric conditions High prevalence of attention‐deficit/hyperactivity disorder, anxiety, depression, obsessive/compulsive disorder, Tourette’s syndrome.

Sensory processing Differences in the perceptions of sights, sounds, textures, disorder smells, and pain. Can have a high pain threshold. Sensory seeking (self‐stimulating (stimming) behaviors – eg. hand flapping), sensory defensiveness (e.g. avoidance of certain environments or foods).

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The Frayed Speaker Wire ‐My Answer to the Question 'What Does Autism Feel Like? By Lori Sealy

Everyone with autism has some form of sensory struggle. Sight, sound, smell, taste and touch (the five senses that all of the experiences of life must pass through) can be absolutely harrowing and horrifying to a person with autism. Everything that enters the ASD body is often accompanied by some semblance of pain or at least by some extremely uncomfortable sensation.

When you go to your stereo and turn on the tunes and all is working well with the speaker wire, then the sound is sweet, crisp and clear. However, if your speaker wire has a short in it, if it’s frazzled by a fray, then things might not go so well, and a clear connection could be lost.

There are moments when that frayed wire may be in the perfectly placed position to still allow really solid sound to pass through. In that moment, the music is coming through loud and clear.

But then something shifts…and suddenly that worn wire produces static (and maybe even sparks). The music’s still there, but with it is another competing noise…a noise that’s taken something pleasant and made it painful. All of a sudden something shifts again, and everything has gone from simple static to overwhelming and excruciatingwhite noise. In the chaotic cacophony you find yourself reaching for the volume control in order to mute the mess because it hurts.

Then things shift once more and the frayed wire is now in a position where nothing’s getting through. The connection has been lost and all is silent. The stereo itself is still making a melody, but that melody is trapped inside the machine and unknown to anyone on the outside. Welcome to autism! Our neurological wiring — the “speaker cable” through which the five senses travel within us — is “frayed.”

https://themighty.com/2016/04/what‐does‐autism‐feel‐like/

Autistic People – Embracing Neurodiversity!

http://autisticadvocacy.org/

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Trajectory of Autism Symptoms Across the Lifespan

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With regard to cardinal characteristics of autism there are 3 possible

lifespan outcomes (e.g. Seltzer et al., 2004, Shattuck et al., 2007).

- Some improve (abatement of symptoms)

- Some plateau

- Some lose skills (esp. associated with psychiatric disorders)

“Indeed, it is astonishing that as many as between 10 and 20% outgrow

the diagnosis, as autism is arguably among the most severe and

pervasive of the developmental disorders.”(pg. 240, Seltzer et al., 2004)

“Behavior is not static, nor is how autism is in our lives static.”

(pg. 252, Bovee, 2000)

Aging in Autistic People

Recent study (Esbensen et al., 2009) noted that restrictive repetitive behaviors, i.e.

‐ restricted interests

‐ stereotypical movements

‐ need for rituals/sameness

‐ compulsive behaviors

‐ self‐injurious behaviors

were less severe and more infrequent with increasing age.

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Causes of Death in Autistic PeopleScant research on disease prevalence rates – pediatric focus.

Causes of death that are higher in ASD population compared with general population include:

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• Seizures (SUD)• Accidental Death (drowning, suffocation)• Cardiovascular Disease• Cancer• Respiratory Disorders (mostly pneumonia)• Suicide

(Shavelle et al., 2001; Mouridsen et al., 2008; Gillberg et al., 2010; Hirvikoski et al., 2016)

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Dual Diagnosis

A study of aged 50+ adults with ASD, reported 31% met criteria for psychiatric illness (Totsika et al., 2010).

However, in contrast, studies in children and adults with ASD report 70‐75% (e.g. Ghaziuddin & Zafar, 2008; Simonoff et al.,2008).

Most common issues generally noted Anxiety Disorders, Depression, Obsessive Compulsive Disorder, Attention Deficit Hyperactivity Disorder, Oppositional Defiant Disorder, Tourette syndrome (e.g Ghaziuddin & Zafar, 2008; Simonoff et al., 2008).

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ASD and Parkinson’s Disease?

Recent study* using a combined total of 66 adults with ASD aged 39 ‐77:

20% had Parkinsonisms ‐tremors/rigidity/bradykinesia (i.e. slow movement)(this excluded those taking neuroleptic drugs that might have resulted in drug‐induced Parkinsonism).

Much higher than general population rates (65‐70 yrs 0.9%**, and 40‐60 years 0.1%***)

*Starkstein et al., (2015); **De Rijk et al. (1997); ***Wirdefeldt et al. (2014).

Sensory Changes and ASD?

“In the general population without autism, sensory changes usually start to

manifest in the 40s to 50s, with reduction in acuity and discrimination

occurring across the senses (Saxon, Etten, & Perkins, 2014).”

A possibility is that some age-related changes in autism symptoms (e.g.,

reduction in frequency and severity in restricted behaviors, stereotypies)

may be explained in some part by the age-related reduction in sensory

sensitivities.

Thus, previous triggers or sensory hypersensitivities are no longer salient,

leading to positive changes in behavior (Perkins & Berkman, 2012).”

Perkins, E. A. & Berkman, K. A. (2012). Into the known: Aging with autism spectrum disorders. American Journal on Intellectual and Developmental Disabilities, 117, 478‐496.

Take home message: With increasing age there may be new tolerance for environments/activities that were previously challenging, giving rise to the opportunity to try new experiences!

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Temple Grandin, PhD,Donald Gray Triplett

Leo Kanner’s seminal paper published in 1943.

Autistic Disturbances of Affective ContactNervous Child, 2, 217‐50.

http://neurodiversity.com/library_kanner_1943.pdf

Vulnerability of Hidden Older Adults 64 year old with newly dx ASD, lived independently, drove, and worked in a mail room of a department store for 20 years. Mother died (aged 101), he relocated to Florida to be near his siblings.

Living in an ALF, developed late onset epilepsy and is no longer able to drive...... In a period of 12 months, he retired, lost his mother, his home, and driving license....

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Perkins, E. A, & Berkman, K. (2012). Into the unknown: aging with autism spectrum

disorders. American Journal on Intellectual and Developmental Disabilities.

Impact of Lifelong Disabilities

• Be aware of the impact of changes in sensory abilities on a person with pre‐existing disabilities (e.g. hearing loss in someone with visual disabilities).

• Overcompensation for limb absence/limited range of motion can increase risk of osteoarthritis, injury.

• Balance of independence versus conservation of functional ability across life course.

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Thoughts on Growing Older with IDD

“[Getting older] isn’t easy.

I need to be busy. I want to

use my mind more.”– George, age 60

Jane Harlan-Simmons and Maribeth Mooney, (Impact, 2010).

A Meaningful Retirement?• First and foremost – respect the preferences of the individual.

• Individual needs vary greatly – (e.g. more activities with friends, or chance for more alone time?).

• New opportunities/experiences? Travel? New hobbies? Volunteer opportunities?

• Heavily scheduled or allow for flexibility ‐ some people need structure to their day/week, others despise it!

• Make plans for it – but allow for flexibility of changing circumstances.

• Within day programs – can provide separate program for retirees. Reasonable expectations? Focus on enjoyable activities.

Caregivers: How can you help optimize the aging process

Health promotion/health prevention ‐Wellness screenings (e.g. vision/hearing, dental,

cancer screenings, bone density).

Careful epilepsy management.

Attention to polypharmacy.

Psychological well‐being ‐ advocate to ensure availability of optimal treatments/medications for those with dual diagnosis (e.g. anxiety, depression).

Emphasize lifelong physical activity, weight‐bearing exercise, adapt activities rather than discontinue.

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Optimizing Successful Aging for Older Adults with IDD

Essential to promote lifelong learning, education, employment options, and socialization opportunities – with increasing age.

Important to offer a range of new activities, that may result in continuing personal development and skill building.

Discuss future residential options/transition timeline.

Retirement planning.

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Establishing Baselines

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Because of the diversity of disabilities, comparisons to the general population are not always helpful.

The ideal baseline of comparison is to the person themselves over time.

Adaptation to Aging, and Aging-Related Chronic Diseases

• Encourage discussion about aging and potential aging health issues (teachable moments).

• Utilize opportunities for discussion when other family members and friends develop age‐related chronic conditions.

• Lifestyle diet and activity changes/monitoring can be difficult but not impossible, and it is never too late to make beneficial changes!

• Peer/caregiver modeling for self‐management.

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Importance of Role Models!

Admiral Lord Nelson – British Naval Hero Nelson’s Column, Trafalgar Square, London.

“There are fours kinds of people in the world:

those who have been caregivers,

those who currently are caregivers,

those who will be caregivers,

and those who will need caregivers.”

Former First Lady Rosalynn Carter

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Consider Family Caregivers

Haley, W. E., & Perkins, E. A. (2004). Current status and future directions in family caregiving and aging people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 1, 24-30.

Concerns

1. Extensive duration of caregiving role

2. Health care concerns due to aging in care recipient/caregiver

3. Fears about the long‐term future of the care recipient

Consider what makes Caregivers of Adults with Intellectual Disabilities unique.

Benefits

1. Normative nature of parental caregiving

2. Expertise and feelings of mastery from long term caregiving

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Reciprocity & Compound CaregivingReciprocity:

Reciprocity exists - 25.3% of caregivers reported receiving more than given in

emotional reciprocity.

22.0% reported receiving more than given in tangible reciprocity.

Suggests co-dependency/interdependency might change with increasing age.

Some caregivers may become the care recipient/role reversals.

Compound Caregiving is also a cause for concern.

Perkins, E. A., & Haley, W. E. (2013). Emotional and tangible reciprocity in middle and older-aged caregivers of adults with

intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 10, 334-344.

Perkins, E. A., & Haley, W. E. (2010). Compound caregiving: when lifelong caregivers undertake additional caregiving roles.

Rehabilitation Psychology, 55, 409-417.

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Mean or %

SD Range

Caregiver Characteristics

Demographic

Age (years) 60.8 8.5 50 – 92

Education (years)* (note 12 years = high school) 15.1 2.4 12 – 22

Gender (Female) 91%

Caregiving

Total caregiving hours per week 39.4 21.3 7 – 88

Compound Caregiver Now (Yes) 37%

Compound Caregiver Ever (Yes) 68%

Anticipated Future Caregiving (Yes) 34%

Duration of compound caregiving (months) 36 *

*note‐12 years = high school, 16 years = college * Median

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Relationship N %Mother 13 (38.2%)Father 4 (11.8%)Spouse 4 (11.8%)Sibling 3 (8.8%)Aunt/Uncle 3 (8.8%)2nd Child with Intellectual Disability 3 (8.8%)Mother in Law 2 (5.85%)Grandchild with Medical Needs 1 (2.9%)

Major Health Issue Alzheimer’s Disease 7 (20.6%)Elderly Frail 4 (11.8%)Advanced Macular Degeneration 4 (11.8%)Cardiovascular Disease 4 (11.8%)Intellectual Disability 4 (11.8%)Parkinson’s Disease 2 (5.9%)Cancer 2 (5.9%)Chronic Mental Disorder 2 (5.9%)Hip Fracture/Replacement 2 (5.9%)Stroke 1 (2.9%)Diabetes 1 (2.9%)Post-Operative Convalescence 1 (2.9%)

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• The study identified 5 “Triple” caregivers

i.e. currently looking after 2 others care recipients plus their son/daughter with intellectual disabilities

E.g. one caregiver was caring for her daughter, a mother with Alzheimer’s disease, and a father with Parkinson’s disease).

The triple caregivers had highest levels of depression

and lowest levels of life satisfaction

Multiple Compound Caregiving

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I feel bad that my time is taken up with my many caregiving duties – it stops me from being able to encourage my son to do more.

My biggest problem is how do I

integrate my son into all the demands

of my caregiving roles.

I feel anxiety and resentment simultaneously dealing with my husband’s issues – it has affected the quality of my marital relationship.

A difficult problem is having the responsibility of running all the maintenance of the home...it’s all new to me.

You need to be adaptable at juggling all aspects of your life.

I feel guilty that I am not able to spend quality time with my other children, and guilty that I need their help.

A Selection of Quotes from Compound Caregivers

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http://flfcic.fmhi.usf.edu/docs/FCIC_CompoundCaregivers_070811.pdf

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White Paper – Policy Recommendations

‐ Stresses importance of care coordination that is responsive to changing caregiver demands.

‐ The need for coordinated respite care.

‐ Using age alone as a basis for caregiver categories to prioritize support services is likely to overlook difficulties faced by compound caregivers.

http://flfcic.fmhi.usf.edu/docs/FCIC_CompoundCaregivers_070811.pdf

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Willamson and Perkins, 2014, suggested 8 critical domains. “A caregiver assessment that addresses all the domains we highlight will ensure that the caregiver’s own needs, support needs, the needs of the care recipient, and both current and anticipated needs will be considered, while upholding guiding philosophies of service delivery including self-determination, and respect for family partnerships.”

Co-dependency versus self-determination in decision makingOptimizing self-determination needs of care recipient and caregiver. Continued co-residency versus exploration of alternate residential placement.

Compound caregivingOnset, intensity, and duration of additional caregiving responsibilities. Impact upon caregiver and care recipient relationship. Anticipated caregiving in the future.

Family cohesiveness and networkWhich family members to involve. Who can be relied upon for assessment and planning purposes.

Informal and formal supportAmount and quality of support from family and friends. Amount and quality of support from providers and agencies.

Caregivers? Are Their Needs Fully Assessed?

Future planningCaregiver succession planning. Contingency plans for short-term. Retirement and financial planning. Availability of future planning resources.

Health-related quality of lifePhysical and mental wellbeing. Personal commitment to health and wellness. Stress management and coping skills.

Life satisfactionPersonal and professional goal attainment for caregiver and care recipient. Economic security. Support in goal attainment from existing policies.

Service utilizationSatisfaction with services. Respite care. Unmet need/waiting list status. Service response to changes in caregiving responsibilities.

Caregivers? Are Their Needs Fully Assessed?

Williamson, H. J. & Perkins, E. A. (2014). Family caregivers of adults with intellectual and developmental disabilities: Caregiver outcomes associated with U.S. services and supports. Intellectual and Developmental Disabilities, 52(2), 147-159. doi:10.1352/1934-9556-52.2.147

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Future PlanningStudy: 340 mothers (aged 58–87 years) of adult children with ID.Less than 50% had made future residential plans for their child. (Freedman, Krauss, & Seltzer, 1997).

To prevent crisis management, state agencies and service providers would be well‐served by implementing policies to address this lack of future residential planning. (Haley & Perkins, 2004).

74% of family members reported the concern, “what will happen to my relative when I am gone,” as being their greatest source of distress. (Lefley & Hatfield, 1999).

The Arc’s Center for Future Planning

The future plan should include information about all aspects of a person’s life including:

• Daily routines, needs and supports• Living arrangements• Finances, including the family and person’s public benefits, assets, incomes, trusts, insurance policies• Doctors’ contact information and information about the person’s medical history (including any medications and food allergies)• Decision‐making support• Education history• Details about employment, hobbies, religious beliefs, interests, friendships, and other important relationships.

https://futureplanning.thearc.org/pages/learn/future‐planning‐101

Don’t Delay.......

Start to make those plans.....

What if’sWho withWhereFinances

http://sonoranucedd.fcm.arizona.edu/sites/sonoranucedd.fcm.arizona.edu/files/CAREGIVING_Roadmap_021010.pdf

Imperative to encourage caregivers to make future plans

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Use of Online Social Support?• There is a still relative paucity of information regarding support on the Internet for caregivers who care for people with IDD

• The utility of the internet is evident particularly when logistical constraints and lack of in‐person support groups are considered.

• However, caution is also advised as group dynamics can result in the perpetuation of inaccurate myths and information.

Perkins, E. A., & LaMartin, K. M. (2012). The internet as social support for older carers of adults with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 9, 53‐62.

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Win Hammer - Artist

http://rwjms.rutgers.edu/boggscenter/dd_lecture/audio.html

Please note ‐ a PDF of this presentation (with live weblinks) along with the audio recording‐will be posted to the Boggs Center Webpage below.

Resources

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Life Course Health Promotion

• A balancing act of guiding philosophies.

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Autonomy &“Duty of Care”Self-direction

Increasing Age

Disability ≠ Inactivity

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Florida Center for Inclusive Communities Free Health Resources

Google “FCIC Health” then click on materials & resources link

http://flfcic.fmhi.usf.edu/program‐areas/health.html?tab=2

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Education for Lifelong Health

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Education for Lifelong Mental Health

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http://flfcic.fmhi.usf.edu/program‐areas/health.html?tab=2available for free download

How do I talk to my doctor?

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My Health Report – for routine appointments

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My Health Passport - hospital admissions


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X-CEL Training

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http://www.xcel.flcic.org/

Promoting Mental Health!

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Florida Developmental Disabilities Council Website:http://www.fddc.org/publications/order‐online

Easing Your Stress Guide

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English version

Spanish version

Free booklet by the Florida Developmental Disabilities Council

Aimed specifically at caregivers of people with developmental disabilities.

Includes description of stress, and guidelines on how to ease stress.

“Be positively selfish by doings things for yourself.”

Remember: Stress is a reaction to an event rather than the event itself.”

http://www.fddc.org/sites/default/files/Easing%20Your%20Stress%20English%206‐3‐2013%20web.pdf

http://www.fddc.org/sites/default/files/Spanish%20Stress%20Caregiver%20Booklet%20101112.pdf

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http://www.sonj.org/health.html

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https://hospicefoundation.org/HFA‐Products/Supporting‐IDD‐DVD‐Self‐Study

Planning for End-of-Life Care

Planning for End-of-Life Care

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www.aaidd.org

Documents the wishes of an individual and their caregivers with respect to healthcare and End‐of‐Life wishes.

Available from the bookstore of the American Association on Intellectual and Developmental Disabilities

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Promoting Health & Wellness

Increases our chance of aging successfully

and ultimately be contented!

“Health is the greatest possession. Contentment is the greatest treasure. Confidence is the greatest friend.”

Lao Tzu

Saxon, S.V., Etten, M. J., & Perkins, E. A. (2014). Physical Change and Aging: A Guide for the Helping Professions (6th ed). New York: Springer.

Over 500 pages providing a comprehensive overview of the aging process, describes common aging‐related conditions/diseases and also includes chapters on caregiving, and aging with lifelong disabilities.

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Contact Information:

Dr. Elizabeth Perkins Associate Director and Research Associate Professor

Florida Center for Inclusive Communities/UCEDD

Email:‐ [email protected]

Tel: (813) 974 7076

President‐Elect, American Association on Intellectual and Developmental Disabilities

Editorial Board of Journal of Policy and Practice in Intellectual Disabilities, Inclusion, and UK’s Royal College of Nursing’s Learning Disability Practice.

FCIC Representative ‐ Florida Developmental Disabilities Council

Advisory Board ‐ Disability and Health Program, Florida Department of Health

Please do not hesitate to email me for pdf’s of any of my authored articles.

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ReferencesBittles, A.H., Petterson, B.A., Sullivan, S.G., Hussain, R., Glasson, E. J. & Montgomery, P.D.

(2002). The influence of intellectual disability on life expectancy. Journal of Gerontology Series A: Biological Sciences and Medical Sciences, 57, M470‐2.

Bovee, J. P. (2000). A right to our own life, our own way. Focus On Autism and Other Developmental Disabilities, 15, 250‐252.

De Rijk et al. (1997). Prevalence of parkinsonism and Parkinson’s disease in Europe: the EUROPARKINSON collaborative study. Journal of Neurology, Neurosurgery & Psychiatry, 62, 10–5.

Esbensen, A. J., Seltzer, M. M., Lam, K. S. L., & Bodfish, J. W. (2009). Age‐related differences in restricted repetitive behaviors in autism spectrum disorders. Journal of Autism and Developmental Disorders, 39, 57‐66.

Evenhuis, H. M. (1995). Medical aspects of ageing in a population with intellectual disability: I. Visual impairment. Journal of Intellectual Disability Research, 39, 19‐26.

Freedman, R. I., Krauss, M. W., & Seltzer, M. M. (1997). Aging parents’ residential plans

for adult children with mental retardation. Mental Retardation, 35, 114–123.Patja, K., Iivanainen, M., Vesala, H., Oksanen, H., & Ruoppila, I. (2000). Life expectancy of people with intellectual disability: a 35‐year follow‐up study. Journal of

Intellectual disability research, 44(5), 591‐599.

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ReferencesPerkins, E. A, & Berkman, K. (2012). Into the unknown: aging with autism spectrum

disorders. American Journal on Intellectual and Developmental Disabilities, 117, 478‐496.

Rowe, J. W., & Kahn, R. L. (1997). Successful aging. The Gerontologist, 37, 433‐440.

Saxon, S.V., Etten, M. J., & Perkins, E. A. (2014). Physical Change and Aging: A Guide for the Helping Professions (6th ed). New York: Springer.

Selikowitz, M. (1992). Down Syndrome: The Facts. In R. I. Brown, Building our Future,The 1992 National Conference of the Canadian Down Syndrome Society, Calgary.

Seltzer, M. M., Shattuck, P., Abbeduto, L., & Greenberg, J. S. (2004). Trajectory of development in adolescents and adults with autism. Mental Retardation and Developmental Disabilities Research Reviews, 10, 234‐247.

Shattuck, P. T., Seltzer, M. M., Greenberg, J. S., Orsmond, G. I., Bolt, D., Kring, S., Lounds, J., & Lord, C. (2007). Change in autism symptoms and maladaptive behaviors in adolescents and adults with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 37, 1735‐1747.

Shavelle, R. M., Strauss, D. J., & Pickett, J. (2001). Causes of death in autism. Journal

of Autism and Developmental Disorders, 31, 569‐576.

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Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008). Psychiatric disorders in children with autism spectrum disorders: prevalence, comorbidity, and associated factors in a population‐derived sample. Journal of the American Academy of Child and Adolescent Psychiatry, 47, 921‐929.

Starkstein, S., Gellar, S., Parlier, M., Payne, L., & Piven, J. (2015). High rates of Parkinsonism in adults with autism. Journal of Neurodevelopmental Disabilities, 7, 29. DOI: 10.1186/s11689‐015‐9125‐6

Totsika, V., Felce, D., Kerr, M., & Hastings, R. P. (2010). Behavior problems, psychiatric symptoms, and quality of life for older adults with intellectual disability with and without Autism. Journal of Autism and Developmental Disorders, 40, 1171‐1178.

Williamson, H. J. & Perkins, E. A. (2014). Family caregivers of adults with intellectual and developmental disabilities: Caregiver outcomes associated with U.S. services and supports. Intellectual and Developmental Disabilities, 52(2), 147‐159. doi:10.1352/1934‐9556‐52.2.147

Wirdefeldt, K., Adami, H.O., Cole, P., Trichopoulos, D., & Mandel, J. (2014). Epidemiology and etiology of Parkinson’s disease: a review of the evidence. European Journal of Epidemiology, 1, 1–58.

Yang, Q., Rasmussen, S. A., & Friedman, J. M. (2002). Mortality associated with Down syndrome in the USA from 1983 to 1997: A population‐based study. Lancet, 359, 1019‐1025.

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