Adults (18 +)

Development:

Within our society, people with Down syndrome have the same rights as everyone else. The right to vote, the right to marry, the right to work, the right to access good medical care, the right to housing, etc.

People with Down syndrome have the same dreams and aspirations as anyone else about how they want to live their lives. These dreams can be achieved if each individual is given the right amount and type of support they need.

People with Down syndrome have many more choices available to them nowadays. In order to make these choices, information has to be presented in an appropriate manner and experiences offered. Adults with Down syndrome continue to learn new skills throughout life. Making informed choices takes practice, particularly if someone else has always made decisions on their behalf.

Important issues for adults with Down syndrome are: relationships, where to live, who to live with, what type and amount of support they need, whether to go to college or work (or both), how to spend their free time, having enough money, being with friends, having holidays and being able to enjoy the lifestyles that they have chosen.

Until more recent years, many adults with Down syndrome continued to live at home with their parents. Nowadays, young people often prefer to live independently from their families, although they may move away from home at a slightly later age than other people.

There are various housing options available – many homes are owned and staffed by housing associations. People can choose to live within a small or large group and various levels of support are offered, depending in individual needs. Some people choose to live alone and in other cases, some families are in a position to purchase a home for their adult child.

Medical

History:

• Interval medical history.
  
• Ask about sleep apnea symptoms.
  
• Monitor for loss of independence in living skills, behavioral changes and/or mental health problems.
  
• Symptoms of dementia (decline in function, memory loss, ataxia, seizures and incontinence of urine and/or stool). This may also represent spinal cord compression from atlanto-axial subluxation.
  
• Assess for signs and symptoms of hearing loss.

Exam:

• General physical and neurological examination (with reference to atlanto-axial dislocation). ** see attached recommendations**
  
• Monitor for obesity by plotting height for weight.
  
• Cardiac exam: listen for evidence of mitral valve prolapse and aortic regurgitation: confirm suspicions with echocardiogram.
  
• Sexually active women will need Pap smears every 1-3 years following the age of first intercourse.
  
• For women who are not sexually active, single-finger bimanual examination with finger-directed cytology exam. Screening pelvic ultrasound every 2-3 years for women who refuse or have inadequate follow-up bimanual examinations. This may require referral to an Adolescent Medicine practitioner or a gynecologist with experience with individuals with special needs. Otherwise, pelvic ultrasound may be considered in place of pelvic examinations.
  
• Breast exam yearly by physician
  
• Testicular exam yearly as increased risk of testicular CA in this population.

Lab and consults:

• Annual thyroid screening (TSH and T4).
  
• Ophthalmologic evaluation every two years (looking especially for keratoconus and cataracts).
  
• Cervical spine x-rays as needed for Special Olympic participation and/or if symptomatic.
  
• Continue auditory testing every two years.
  
• Mammography: a mammogram every other year beginning at 40, and yearly beginning at 50.
  
• Continue twice-yearly dental visits.
  
• Mental health referral for individuals with emotional and behavioral changes.

Developmental:

• Continue speech and language therapy, as indicated. For individuals with poor expressive language skills, consider referral for augmented communication device.
  
• Discuss plans for further programming/vocational opportunities at age 21 or when formal schooling ends.
  
• Be aware that accelerated aging may affect functional abilities of adults with Down syndrome, more so than Alzheimer disease.

Recommendations:

• Discuss plans for alternative long term living arrangements.
  
• SBE prophylaxis needed for individuals with cardiac disease.
  
• Continue dietary and exercise recommendations (see childhood, above).
  
• Discuss estate planning and custody arrangements.
  
• Encourage social and recreational programs with friends.
  
• Register for voting and selective service at age 18.
  
• Reinforce the importance of good self-care skills (grooming, dressing, and money handling skills). Bereavement counseling for individuals who have experienced the loss of an important person in their life, either via death or by other circumstances: sibling moves away after marriage, or goes off to college.