Adults with Down Syndrome

Question 1

Adults with Down Syndrome

Answer 1

Life span is about 60 years- so many are outliving parents

Have aspirations like any young adult- dating, marriage, job, independent living

Question 2

Complications

Answer 2

In infancy a fair number have heart defects and other health problems. Providers are able to care for these kids in a general practice.
referred to pediatric cardiologists, pediatric endocrinologists & pediatric specialists of other types

Question 3

Special Health Concerns

Answer 3

These adults need routine health care that is appropriate for any adult-immunizations, etc.
Mammograms and paps - not usually necessary. Dont get brst CA, very few risk factors for cervical CA
metabolic rate is about 50% of that of other adults - tendency to be obese
May have high lipid profile, but do not develop heart dz (MI/stroke, etc) Statins create more probs than they solve
also have “loose joints” and so the obesity can cause joint problems.

Question 4

At Risk

Answer 4

At risk for hypothyroidism and must be screened (we do not want their metabolic rate to slow any more)
Hypotonic at birth and through their life.
Small oral structures.
This combination (with or without the obesity) causes them to be at risk for sleep apnea.
Because they age somewhat faster – (in the late 30s) they are at risk for Alzheimers- about 1/3 develop it
At risk to develop OCD behaviors. Behaviors can show earlier in life but can be managed- as they age the behaviors can become problematic.
Also many have celiac disease but can develop in the younger years

Question 5

Considerations

Answer 5

Many are non-verbal so the provider must be investigative in nature. If they or a parent or a care provider comes with concerns about behaviors the provider must sort through what may be behavioral or what may be physical symptoms of a real problem. If there is a behavior disorder R/O physical/psychological issues first.
Must really depend on care givers to tell you what has changed and how it has changed

Question 6

Tx

Answer 6

Hypothyroidism- Levothyroxine, routine monitoring
Sleep apnea- Sleep study with a lab that can handle special needs. CPAP (new concern- will they wear it? Try to create a desensitization plan)
OCD- SSRI- Zoloft & Prozac
Alzheimers- Aricept, Exelon patch. Namenda - of no assistance in this population
Caring, understanding & empathy

Question 7

Other Concerns

Answer 7

Contraception/amenorrhea - depo not a good contraceptive - d/t wt gain
Marriage & reproduction - 50% chance of Down Syndrome baby
Independent living - variety of living situations
Guardianship - parents must decide if they want guardianship at age 18. If parents choose not to, the pt has to sign for all medical procedures, etc
Employment - no one wants to employ full time, if they work full time, they lose Medicare. So most work part time, if they can find a job at all

Question 8

Grief in DS

Answer 8

Do not grieve the way people without DS do
They have a very visual memory- so they replay the “tape” and the grief is fresh as are the emotions and then they go on.

Question 9

Memories
Routines
Autism

Answer 9

Very visual memory - that is why calendars and lists work
They have a radar about them and they know when there is an upset, or that you are unhappy, or that you like them and if you care- it’s a strength as well as a problem at times
1 in 10 have autism- but were not diagnosed as a child
The OCD behaviors make them great employees- they can be very happy doing the same thing every day in the same routine.