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Community
Health Care for
Adults and Elders with Developmental Disabilities Research and Training
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Developmental Disabilities (UCEDD)
funded by the Washington State Developmental Disabilities Council
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version of The Nurse Practitioner’s Role in Caring for Adults with
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The Nurse Practitioner’s Role in Caring for Adults
with Developmental Disabilities
Lisa Krogman, RN, MN
Definition Of Developmental Disabilities
- Person with at least one of the following conditions:
- Cerebral Palsy
- Mental retardation
- Epilepsy
- Autism
- Neurological Condition Similar to mental retardation
- Disability must occur before age 18
- Disability must be expected to continue indefinitely
and result in substantial impairment
Demographics
- In the 1970’s deinstitutionalization lead to
influx of DD adults living in community settings
- Life expectancy has increased from 19 years
of age in the 1930’s to 66 years in 1993
- Estimates are 2-3% of the total of the U.S
population
Issues in providing care to adults with disabilities
- Primary care providers may have had little
formal training in care of this population
- Patients with disabilities may be unable to
clearly communicate needs/wants
- Patient may not be able to fully cooperate
because of physical or cognitive disabilities
- Patient may find the provider’s office setting
very threatening
- Provider may feel uncomfortable with disabilities
- Patients
tend to be time consuming (overall H&P may take three times as long as
with non-disabled patients).
- Patients tend have multiple care coordination
needs
- Provider’s may fail to “see past the disability”
- Key Points: Disabled patient are living longer
and in the community.
- During the course of your practice, you may
provide care to disabled adults
- Disabled adults are entitled to the same
preventative care given to non-disabled adults
Visits to the provider
- Patient may become agitated or frightened
in unfamiliar or threatening surroundings
- May be accompanied by caregiver or case
manager
- Long waiting times may increase fearfulness
or agitation
- May be helpful to have patient visit the
site with others prior to own appointment to increase comfort level
- If possible, have patient be the first
scheduled appointment of the day
- Encourage office staff to schedule more
time with patients
- If behavioral interventions don’t work,
anti-anxiety medication may be reasonable
- Lorazepam
0.5mg orally 1 hour prior to visit(1)
- Other medications to consider anti-histamines,
short-acting sedative hypnotics (2)
1-Messinger-Rapport and Rapport, 1997
2-Anderson, 2002
Obtaining a History
- Even if accompanied by caregiver, if
client is verbal, they should be included in obtaining information
- Patients are entitled to confidentiality,
and should have time alone with provider to discuss concerns
- Request information in writing
- Initial data collection should include
same aspects as non disabled client
- Assess baseline communication style
- Medication
history essential
- Assess and obtain a baseline of
ADLs
Routine Health CareVaccinations
- Td q 10 years
- Influenza yearly
- Pneumococcal vaccine
- If patient is in a group home:
- Surface antigen for Hep A and B; vaccinate if negative
- Varicella titer- if the patient has
no history of disease-vaccinate if non -immune
- Offer one time meningococcal vaccine
- Yearly PPD
Routine Health Care Screening
- Preventable diseases occur in this population
as does in the non DD population
- Follow USPHS/CDC guidelines
- Auditory and visual senses tend to deteriorate
more rapidly
- Yearly vision and auditory screening recommended
and in some states required for group home certification
- Dental Screening
- Offered at least every 2 years- may need
to consciously sedate; e.g Ketamine
- Valvular defects (Down’s Syndrome) may require
antibiotic prophylaxis
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- Colon cancer screening
- Same as general population-occult blood after
age 50, flexible sigmoidoscopy after age 50 or sooner if significant
history
- May need general anesthesia to perform. Important
to weigh risk/benefit of frequency of procedure
- Yearly thyroid stimulating
hormone (TSH) for people with Down’s Syndrome
- Female Specific Screening:
- Mammography and clinical breast exam
should be performed according to current guidelines
- Gynecological exams should be performed
at least every 3 years or yearly if sexually active
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Female Issues--Screening
- May need antianxiety, conscious
sedation or general anesthesia to perform
- Consider mobility issues
- Behavioral interventions using
pictures, developmentally appropriate language may be useful for preparation
- Contraception CounselingShould be done for all women
who are sexually active
- Management of menses may include
use of Depo-Provera 150 mg IM q 3 months.
- May become amenorrhic or have
decreased flow
- Assess risk of osteoporosis-
especially in those women on Depo-Provera long term
- Assess risk of weight gain
with contraceptive method
Male Screening Issues
- Testicular exam should be
done up to age 40
- Digital rectal exam done
to assess for prostate cancer
- PSA screening controversial.
Done as in general population
Health Lifestyles/Behaviors
- Assess use of tobacco, alcohol
and other drugs
- Discuss safe sex issues as
appropriate, including physical safety issues
- Risk of obesity increases
in mentally retarded population-group home population
- Diet counseling important
- Exercise guidelines similar
to general population.
- Added emphasis on safety-Atlantoaxial
instability occurs in 14% of patients with Down’s Syndrome
- Education remains an important
intervention
Acute/Chronic Illness
- Remember, most chronic
conditions occur with the same frequency as in the general population,
however, the management may be more challenging
- Epilepsy/seizure disorder
occurs with more frequency in this population
- Use of psychotropic meds
are more common-avoid long term use
- In a group home situation,
the NP should provide education for the caregivers. It’s stressful having
a client with a chronic condition and they need to be aware of dangerous
signs and symptoms
Care Coordination
- Participation in
education or vocational plans
- Work with behavior
specialists
- Other aspects of
interdisciplinary care
Special Situations
- The adult DD population
is more vulnerable to abuse-important to include routine safety screening
during health maintenance visit
- Important to assess and
prevent secondary disability
- An interdisciplinary
approach is essential to providing thorough care
- Consultation with MDs,
pharmacists, PHN, OT, PT, vocational rehab.necessary for effective care.
References
- Prevatt, Betsy. (1998).
Gynecologic Care for Women With Mental Retardation. Journal of Obstetric,
Gynecologic and Neonatal Nursing.Vol. 27 (3).
- Van Riper, M. and Cohen,
W.I. (2001). Caring for Children with Down Syndrome and Their Families.
Journal of Pediatric Health Care. Vol.15 (3).
- www.disAbility.gov
- Anderson, K.(2002).
Practice Guideline: Annual Medical Review of Adults with Developmental
Disabilities.
- Griswold, K.S. and
Goldstein, M.Z. (1999). Issues Affecting the Lives of Older Persons with
Developmental Disabilities. Psychiatric Services. 50(3).
- Messinger-Rapport,
B.J. and Rapport, D.J (1997). Primary Care for the Developmentally Disabled
Adult. Journal General Internal Medicine. Vol (12)
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