Download T K U

THE KNOWN AND UNKNOWN OF
AGING WITH DEVELOPMENTAL
DISABILITIES.
Dr. Elizabeth A. Perkins
Associate Director and
Research Assistant Professor
Presentation for
the Distinguished Speaker Series,
Ithaca College Gerontology Institute
February 11, 2013.
Ithaca College
Department of
Speech Language
Pathology and
Audiology
Program on Aging and
Developmental Disabilities
Social Clubs
To fully participate in all aspects of life within ones’ own community........
Objectives
• To provide a general overview of
developmental disabilities, and factors that
promote successful aging
• Discuss specific aging/aging health issues in
people with Down syndrome, Cerebral Palsy,
Autism Spectrum Disorders.
• To consider the needs of aging family
caregivers and compound caregivers
3
Communication-People First Language
Language is powerful - for language conveys respect for personhood and equality,
and shapes our perceptions!
Avoid: “the disabled”
Use: person with a disability
Avoid: “confined to a wheelchair”
Or “wheelchair user”
Use: person who uses a wheelchair
Avoid: “autistic person”
Use: person with Autism
Avoid: “he’s a Down’s”
Use: person with Down syndrome
Disability is an attribute, and should never be the primary
description of the person!
Rosa’s Law passed in 2010 – to
replace the term mental retardation to
intellectual disability in all federal
legislation.
Developmental Disabilities
Federal Definition
Severe, chronic disabilities attributable to mental and/or
physical impairment, which manifest before age 22 and are
likely to continue indefinitely.
They result in substantial limitations in ≥ 3 areas:
• receptive and expressive language
• learning
• mobility
• self-direction
• capacity for independent living
• economic self-sufficiency
• self-care
• continuous need for individually planned and coordinated services
Common Developmental Disabilities
• DD population prevalence ≈ 15%
– Intellectual disability
– Cerebral palsy
– Autism spectrum disorders
– Deaf/Hard of Hearing
– Blind/Vision impairment
– Epilepsy
Life Expectancy:
Persons with Intellectual Disabilities
Age
Level of Intellectual Disability
(Data from Bittles et al., 2002)
Health Disparities of
People with Intellectual Disabilities
CDC’s 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 issues
9
Successful Aging
Optimal Aging
“A kind of utopia, namely, aging under development enhancing
and age-friendly environmental conditions”
(Baltes & Baltes, 1990).
Successful Aging
Avoidance of disease and disability
Maintaining mental and physical function
Sustained engagement in social and productive activities
(Rowe & Kahn,1997).
The Diversity of the Aging Process
Aging with lifelong
disability &
comorbidity
Susceptibility to disease
Social and cultural
factors
(e.g. quality of social
network), family
cohesiveness
Individual
Aging Process
Compensatory
behaviors + access to
Resources (e.g. healthcare).
Universal physical changes
(sensory, reduced
efficiency/capacity of organ
systems, loss of
muscle/bone mass)
Genetic profile
Lifestyle
Gender
11
Recognize Impact of Lifelong Disabilities.
• Sensory 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 impairment).
• Physical Disabilities: Overcompensation for
limb loss/deficiencies can increase risk of
osteoarthritis, injury.
• Balance independence versus conservation of
functional ability across life course.
12
Risk of Accelerated
Osteopenia/Osteoporosis/Sarcopenia
People with Developmental Disabilities can be at greater risk due to:
1) Nutrition issues (eg. food sensitivities or intolerances,
may result in inadequate levels of dietary
calcium/vitamin D)
2) Lifelong use of medications to treat associated conditions
(e.g. epilepsy) and behavioral/mental health issues
3) Lack of weight-bearing exercise, physical
disability/immobility may present difficulties (lifelong
underdeveloped muscle mass)
13
Modifiable versus Unmodifiable Factors for
Successful Aging
Unmodifiable




Age
Gender
Genetics
Ethnicity
14
Modifiable versus Unmodifiable
Factors for Successful Aging
Modifiable










Eat a balanced and healthy diet (and supplements)
Maintain a healthy weight
Exercise on a regular basis (include weight bearing exercises)
Manage stress / allow time for relaxation
Don’t smoke /alcohol in moderation (and avoid secondary smoking!)
Education (promote lifelong learning)
Occupation (esp. promotes curiosity, or working with people)
Leisure activities (mental, social, physical)
Enriching relationships (evolving)
Living in a nurturing/clean physical environment
15
Use it or Lose it!
Down Syndrome (1 in 733)
1866 First described by Dr. John Langdon Down.
1959 Discovery of chromosomal abnormality Jerome Lejeune.
3 types
Trisomy 21 - (~ 95%).
Translocation – (~ 3%). The chromosomes that can be involved are
numbers 13, 14, 15, 22. Translocation 14/21 is most common.
Mosaic Trisomy 21 - (~ 2%).
Life Expectancy:
Persons 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,
8 times the national life expectancy increase. (Yang,
Rasmussen & Freidman, 2002).
Life expectancy is approx 60 years (Bittles et al., 2002).
Oldest Man ever,
Bert Holbrooke –
Age 83
As with the general population, ethnicity can impact life
expectancy (Yang, Rasmussen & Freidman, 2002).
Oldest person alive with Down syndrome in the world is
Joyce Greenman, 87, from London, England.
18
Down Syndrome
General features of Down Syndrome:
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
(recurrent conjunctivitis and blepharitis), hearing (conductive and
sensorineural) and vision (myopia, strabismus, nystagmus,
cataracts).
Many are born with congenital heart defects.
Increased risk of Hypothyroidism, Diabetes, Epilepsy, Sleep Apnea,
Leukemia, Lymphoma, Testicular cancer, Liver cancer, and Atlantoaxial instability, compromised immune system.
Most have mild to moderate intellectual disability.
19
Aging Medical Issues in Adults with
Down Syndrome
Epilepsy prevalence rates increase with age –
~ 10% children have epilepsy
~ 46% adults aged 50 +
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 pop –
possible factors – sedentary lifestyle, hypotonia, endocrine
dysregulation - affecting bone resorption.
Premature menopause (average age 44 versus 52 in general
popn), also associated with increased risk of Alzheimer’s
disease.
20
Down Syndrome & Alzheimer’s Disease
Well-established that all people with DS develop the
neuropathological lesions associated with AD.
Amyloid plaques, neurofibrillary tangles, present by age 40, though
not all people with DS will develop AD.
Beta Amyloid is derived from Amyloid Precursor Protein, which is
found on Chromosome 21 – the chromosome that has an
additional copy in DS…thus there is over-expression of APP, linked
with higher prevalence of AD in people with DS.
21
Cerebral Palsy (1 in 303)
22
Data from CDC http://www.cdc.gov/ncbddd/cp/data.html
23
Health and Aging Issues in Persons
with Cerebral Palsy
Primarily issues associated with accelerated aging of
musculoskeletal system
- Increased risk of immobility
- Increased risk of osteopenia, osteoporosis,
(exacerbated by medication), fractures, and
osteoarthritis esp. from athetoid movements
- Decline in functional abilities (ADLs/IADLs)
- Bowel and bladder dysfunctions
- Respiratory compromise & infections
- Gastroesophageal reflux
- Chronic pain and stiffness (often under-reported/dx/tx)
24
Autism Spectrum Disorders (1 in 88)
3 cardinal characteristics
- Impairment in social interaction
- Impairment in communication
- Restricted repetitive and stereotyped
patterns of behavior, interests and activities.
Special Issue on Aging
and End Of Life,
American Journal on
Intellectual and
Developmental
Disabilities (2012).
Guest Editors
Elizabeth Perkins &
Sandra Friedman
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.
~ 40% have Intellectual Disability
~ 40% have Epilepsy
25
Life Expectancy and
Causes of Death in People with ASD
Life expectancy reduced slightly compared with the general
population - even among those with ASD, without severe
physical disabilities, and were ambulatory (Shavelle & Straus,
1998).
Scant research on disease prevalence rates.
Causes of death that are higher in ASD population compared with
general population include:
- Seizures (SUD)
- Accidental Death (drowning, suffocation)
- Cardiovascular Disease
- Cancer
- Respiratory Disorders (mostly pneumonia)
(Shavelle et al., 2001; Mouridsen et al., 2008; Gillberg et al., 2010)
26
Trajectory of Autism Symptoms
Across the Lifespan
With regard to symptoms 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)
27
Aging Persons with Autism
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.
28
Are Reduction in Behavioral Symptoms Related to
Aging of the Sensory Systems?
 Sensory seeking and sensory defensiveness (i.e. high
and low thresholds for response to sensory stimuli,
oral, tactile, auditory, and visual)
 With increasing age – there are changes in threshold
levels in both directions to levels usual in the general
population (i.e. hypersensitivity decreases and
hyposensitivity increases) (Kern et al., 2006).
 Therefore previous triggers to sensory defensiveness
and sensory seeking behaviors are no longer as salient.
29
Dual Diagnosis
A study of aged 50+ adults with ASD, reported 31% met criteria
for psychiatric caseness (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).
30
Two Notable Examples of
Older Adults with Autism Aging Successfully
Donald Gray Triplett
Age 78
Temple Grandin., PhD
Age 64
31
Vulnerability of “Hidden” Older Adults
64 year old with newly diagnosed 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....
32
Optimizing Successful Aging for Older Adults with IDD
Health promotion/health prevention - Wellness
screenings (e.g. vision/hearing, dental checkups,
cancer screenings, mammograms).
Psychological well-being - advocate to ensure
availability of optimal treatments/medications for
those with dual diagnosis (e.g. anxiety, depression).
Effective epilepsy management.
Polypharmacy (careful monitoring with increasing
age).
33
Optimizing Successful Aging for
Older Adults with IDD
 Essential to promote lifelong learning, education,
employment (retirement) and continuing
socialization opportunities – with increasing age.
 Emphasize lifelong physical activity, weight-bearing
exercise, adapt activities rather than discontinue.
 Important to offer a range of new activities, that may
result in continuing personal development and
compensatory skill building.
 Retirement planning (or switching to appropriate
retirement activities).
 Discuss and plan future residential options/transition
timeline.
34
Adaptation to Aging, and AgingRelated Chronic Diseases
• Encourage discussion about aging and potential aging
health issues to prepare adults with IDD.
• Lifestyle diet and activity changes/monitoring can be
difficult but not impossible, and it is never too late to
make beneficial changes!
• If individual self-administers or caregiver administer
meds – perform checks for accuracy more regularly
• Peer/caregiver modeling for self/management of
chronic diseases (e.g. diabetes).
35
Education for
Lifelong Health Series
http://flfcic.fmhi.usf.edu/program-areas/health.html under the materials and resources
tab.
36
My Health Passport
4 page health advocacy document.
Provide details of general health information, but more
importantly special needs and supports including
- Communication,
- How pain is expressed
- Best way to help if distressed.
-Experience with medical procedures
-Mobility/Personal hygiene needs
-Drinking/Eating needs
-Sensitivities (food, sounds, odors etc).
http://flfcic.fmhi.usf.edu/docs/FCIC_Health_Passport_Form_Typeable_English.pdf
37
Where is Care Provided to Older Adults?
Always respect the wishes of the person with I/DD first and
foremost, and their caregiver considerations.
Various models of care available depending upon circumstances,
and medical complexity –e.g. Supported/Independent Living, Family
Home, Group home, Intermediate Care Facility/DD.
Recognize sensitivity and reluctance to using nursing home care
as a form of re-institutionalization.
Judgment must be made with resources actually available.
Ideal/preferred is not always available – compromises often have to
be made.
Isolated in the community versus a community in isolation?
38
The Ideal - “Aging In Place”
Aging in Place (AIP) strategies ......
“allow individuals to customize their own housing
and health care programs, by drawing on friends,
family, and neighbors, and then supplementing
these community supports with more in depth
public services only as needed.”
(Ball, 2004).
39
Where do people with IDD live?
Independent/family settings (88%)
Supervised Residential Setting (12%)
With Family Caregivers
Group Homes
Independent/Supported
living
Intermediate Care
Facilities/DD
With Spouse
Skilled Nursing Facilities
State Institutions
(cited in Braddock et al., 2008., The State of the States in Developmental Disabilities).
Aging Family Caregivers
Breakdown by age group of the 2.82 million family caregivers.
25%
716,212
40%
1, 118,027
Age < 41
Age 41-59
Age 60 +
991,114
(Braddock et al., 2008)
35%
41
What makes caregivers of adults with intellectual
disabilities different?
Concerns
1. Extensive duration of caregiving role
2. Health care concerns due to aging in care recipient/care giver
3. Fears about the long-term future of the care recipient
Benefits
1. Normative nature of parental caregiving
2. Expertise and feelings of mastery from long term caregiving
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.
42
Caregiver Study
1) How common is compound caregiving?
2) Does compound caregiving status impact physical and
mental well-being of compound caregivers compared
with non-compound caregivers?
Perkins , E. A. & Haley, W. E. (2010). Compound caregiving: when lifelong caregivers
undertake additional caregiving roles. Rehabilitation Psychology, 55, 409-417.
43
Mean or
%
SD
Range
Caregiver Characteristics
Demographic
Age (years)
Education (years)
Gender (Female)
60.8
15.1
91%
8.5
2.4
50 – 92
12 – 22
Caregiving
Total caregiving hours per week
Compound Caregiver Now (Yes)
Compound Caregiver Ever (Yes)
Anticipated Future Caregiving (Yes)
39.4
37%
68%
34%
21.3
7 – 88
Duration of compound caregiving (months)
36 *
* Median
44
Compound
Caregiver
Non-Compound
Caregiver
M
SD
M
SD
t
Age (years)
58.8
7.9
61.1
8.9
1.22
Education
14.7
2.29
15.4
2.53
1.26
Total Comorbidities
4.79
2.96
5.42
3.01
.97
Comorbidity Interference
8.68
8.66
9.52
7.47
.494
Total Caregiving Hours
38.66
20.82
39.84
21.89
.253
Caregiving Hours + CCGa hours
51.60
26.34
39.84
21.88
-2.30*
Caregiver Characteristics
Demographic
Health and Caregiving
a CCG
= Compound caregiving * p< .05 (2-tailed).
45
Caregivers (57) and Compound Caregivers (34)
Compound
Caregiver
Non-Compound
Caregiver
M
SD
M
SD
t
Life Satisfaction
17.05
5.81
17.58
7.03
.36
Depression
10.94
9.30
12.61
9.65
.85
Physical Health
44.51
11.28
43.09 10.07
-.62
Mental Health
47.66
11.22
48.67 11.53
.41
Desire to Place
3.61
1.72
2.49
* p< .01 (2-tailed).
1.63
-3.11*
Relationship to Caregiver
Mother
Father
Spouse
Sibling
Aunt/Uncle
2nd Child with Intellectual Disability
Mother in Law
Grandchild with Medical Needs
Major Health Issue of Compound Care Recipient
Alzheimer’s Disease
Elderly Frail
Advanced Macular Degeneration
Cardiovascular Disease
Intellectual Disability
Parkinson’s Disease
Cancer
Chronic Mental Disorder
Hip Fracture/Replacement
Stroke
Diabetes
Post-Operative Convalescence
N
13
4
4
3
3
3
2
1
%
(38.2%)
(11.8%)
(11.8%)
(8.8%)
(8.8%)
(8.8%)
(5.85%)
(2.9%)
7
4
4
4
4
2
2
2
2
1
1
1
(20.6%)
(11.8%)
(11.8%)
(11.8%)
(11.8%)
(5.9%)
(5.9%)
(5.9%)
(5.9%)
(2.9%)
(2.9%)
(2.9%)
47
A Selection of Quotes from Compound Caregivers
My biggest problem is how do I
integrate my son into all the demands
of my roles.
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.
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.
I feel anxiety and resentment
simultaneously dealing with my
husband’s issues – it has affected the
quality of my marital relationship.
48
Compound Caregivers
- Based upon previous
research articles
- Highlights difficulties and
relative frequency of
being a “compound
caregiver”
- Aims to raise awareness
of this issue and offer
state/federal solutions
http://flfcic.fmhi.usf.edu/docs/FCIC_CompoundCaregivers_070811.pdf
49
How can we support caregivers?
• Utilize and embrace the unique knowledge and expertise
the caregiver has.
• Promote collaboration and discussion of caregiving issues
with all family members (e.g. siblings) to encourage fair
distribution of caregiving duties.
• Encourage use of available services and options (e.g. home
help, companion services, respite).
• Encourage building/strengthening of informal network –
friends, other parents/caregivers, local community
resources, online communities.
• Imperative to encourage caregivers to make future plans
50
How can we support caregivers?
• Encourage caregivers to participate in family/parent or
caregiver support groups including online communities.
• Use respite care, and encourage “me” time – a regularly
scheduled activity that the caregiver truly enjoys.
• Encourage caregivers to be more aware of their health,
and stress, and not neglect or overlook their own
healthcare needs.
51
Don’t Delay.......
Start to make those
plans.....
What if’s
Who with
Where
Finances
http://sonoranucedd.fcm.arizona.edu/sites/sonoranucedd.fcm.arizona.edu/files/CAREGIVING
_Roadmap_021010.pdf
52
The Future is Now!
The Future is Now: A Future Planning Training Curriculum for Families and
Their Adult Relatives with Developmental Disabilities.
Factor, A., Debrine, E., Caldwell, J., Arnold, K., Kramer, J., Nelis, T., & Heller, T.
(2010). 3rd Edition
This curriculum helps families to plan and prepare a letter of intent that lays
out their dreams for the future and identifies the steps required to
transform this dream into a reality.
Contains updated and expanded resource lists!
http://www.rrtcadd.org/blog/files/c640b98a22c0251fd9d4ea8f1e8f615b-5.html
53
Easing Your Stress Guide
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.”
English version www.fddc.org/news/publications-easing-your-stress
Spanish version www.fddc.org/news/publications-aliviando-su-estres
54
A Tale of Triumph and New Transitions
Artist: Win Hammer
55
Advocate for better geriatric care for older
adults with I/DD!
• increase training, preparation, and sensitivity of health care
professionals towards persons with I/DD.
• create less dependency on pediatricians who provide care to
patients with ID long after the transition to adult medical
services should have occurred, and
• require that curricula (currently there are no requirements)
for US medical schools incorporate teaching competency in
the provision of lifespan care to persons with intellectual
disabilities.
Perkins, E. A., & Moran, J. A. (2010). Aging adults with intellectual disabilities. Journal of
the American Medical Association, 304(1), 91-92.
Woodard, L., Havercamp, S., Zwygart, K., & Perkins, E. A. (2012). An innovative clerkship
module focused on patients with disabilities. Academic Medicine, 87, 537-542.
56
The Known and Unknown
We generally know most health issues that can present in
older people with developmental disabilities.
We still need more specific information, especially regarding
older adults with autism spectrum disorders, and rarer types
of developmental disabilities.
We still need more information regarding social/recreational
outcomes, and promoting proper transition to retirement.
We need more information about family caregivers, the
impact of the changing balance of formal/informal support,
compound caregiving, and how we can best support people
with developmental disabilities to age in place.
57
Available from all major retailers, and e-book
version.
This 500 page book provides a comprehensive
overview of the aging process, describes
common aging-related conditions/diseases and
also includes chapters on caregiving, and aging
with lifelong disabilities.
Saxon, S.V., Etten, M. J., & Perkins, E. A. (2010).
Physical Change and Aging: A Guide for the Helping
Professions (5th ed). New York: Springer.
58
Contact Information:
Dr. Elizabeth Perkins
Research Assistant Professor/Health Coordinator
Florida Center for Inclusive Communities/UCEDD
University of South Florida, Tampa, FL
Email:- [email protected]
Tel: (813) 974 7076
www.flcic.org
http://flfcic.fmhi.usf.edu/projects/health.htm
If you would like reprints of further information about of any my publications (bold in the reference list),
please do not hesitate to email me!
Member-At-Large, Board of Directors, American Association on Intellectual and Developmental Disabilities
FCIC Representative, Florida Developmental Disabilities Council
59
References
Ball, M. S. (2004). Aging in Place: A toolkit for local governments. Atlanta, GA:
Atlanta Regional Area Agency on Aging.
Baltes, P. B., & Baltes, M. M. (1990). Psychological perspectives on successful
aging: The model of selective optimization with compensation. In P. B.
Baltes & M. M. Baltes (Eds.), Successful aging: Perspectives from the
behavioral sciences (pp. 1–34). New York: Cambridge University Press.
Bittles, 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.
Braddock, D. (1999). Aging and developmental disabilities: Demographic and
policy issues affecting American families. Mental Retardation, 37, 155161.
60
References
Esbensen, A. J., Seltzer, M. M., Lam, K. S. L., & Bodfish, J. W. (2009). Agerelated differences in restricted repetitive behaviors in autism spectrum
disorders. Journal of Autism and Developmental Disorders, 39, 57-66.
Ghazziuddin, M., & Zafar, S. (2008). Psychiatric comorbidity of adults with
autism spectrum disorders. Clinical Neuropsychiatry, 5, 9-12.
Gillberg, C., Billstedt, E., Sundh, V., & Gillberg, I. C. (2010). Mortality in
autism: a prospective longitudinal community-based study. Journal of
Autism & Developmental Disorders, 40, 352-357.
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.
Kern J. K. et al. (2006). The pattern of sensory processing abnormalities in
autism. Autism, 10, 480-494.
Mouridsen, S. E., Brønnum-Hansen, H., Rich, B., & Isager, T. (2008). Mortality
and causes of death in autism spectrum disorders: an update. Autism, 12,
403-414.
61
References
Perkins, E. A. (2010). The compound caregiver: A case study of multiple
caregiving roles. Clinical Gerontologist, 33, 248-254.
Perkins, E. A. (2011). Compound caregivers: overlooked and overburdened
[White paper]. Tampa, Florida: University of South Florida, Florida Center for
Inclusive Communities.
http://flfcic.fmhi.usf.edu/docs/FCIC_CompoundCaregivers_070811.pdf
Perkins , E. A. & Haley, W. E. (2010). Compound caregiving: when lifelong
caregivers undertake additional caregiving roles. Rehabilitation
Psychology, 55, 409-417.
Perkins, E. A., Lynn, N., & Haley, W. E. (2007). Caregiver issues associated with
wandering. In A. L. Nelson & D. L. Algase (Eds.) Evidence based protocols
for managing wandering behaviors. (pp. 123-142). New York: Springer.
Perkins, E. A., & Moran, J. A. (2010). Aging adults with intellectual disabilities.
Journal of the American Medical Association, 304(1), 91-92.
Rogerson, P. A., & Kim, D. (2005). Population distribution and redistribution of
the baby-boom cohort in the United States: Recent trends and implications.
Proceedings of the National Academy of Sciences, 102, 15319-24.
62
References
Rowe, J. W., & Kahn, R. L. (1997). Successful aging. The Gerontologist, 37, 433-440.
Saxon, S.V., Etten, M. J., & Perkins, E. A. (2010). Physical Change and Aging: A
Guide for the Helping Professions (5th 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.
63
References
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.
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.
Woodard, L., Havercamp, S., Zwygart, K., & Perkins, E. A. (2012). An innovative
clerkship module focused on patients with disabilities. Academic Medicine,
87, 537-542.
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.
64