Promoting Health and Mental Well-being in Individuals with Down syndrome

The following is from notes that I took at a talk presented by Dr Brian Chicoine and Dr McGuire on Promoting Health and Mental Well-being in individuals with Down syndrome.  Anything I took directly from the handouts is in quotations.

I.  Health care

Health is defined as "a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity."  Stress should be placed on the "complete" or the whole individual, because any area that is not well can affect a person adversely.  Because of this Dr Chicoine and Dr McGuire say that a multidisciplinary team is best when treating the patient with Down syndrome.

I looked up the definition of a multidisciplinary team and found " Multidisciplinary teams, as the name implies, are teams of people from different disciplines that come together for a common purpose."  So basically, it is a team of doctors who work together in meeting the patient's needs.  If you have had a child in Early Intervention or the school system, you are probably familiar with the multidisciplinary team. 

I have found that this type of approach to health care is hard to come by, however.  Certain Down syndrome clinics and centers follow this approach, but as far as health care in general, it is not usually the case, from my experience.  As the parent, we usually have to piece everything together and try to connect the dots where needed.  Personally, I think it would be amazing to have a team like that caring for Kamdyn.  We can all wish, right?  Moving on.....

II.  Premature aging

If you have a child with Down syndrome, you have probably heard and read about Alzheimer's and Down syndrome.  Maybe I just wasn't hearing right, but I was under the impression that because Kamdyn has Down syndrome, she is more likely to get Alzheimer's.  Dr Chicoine and Dr McGuire, however, say

A study was done some years ago that looked at the brains of a group of persons with Down syndrome that had died and found plaques and tangles in nearly all of them over the age of 35. Because of this, many people thought that all persons with Down syndrome over the age of 35 or 40 developed Alzheimer’s disease. Our own research, which gathered information on 3,000 adults with Down syndrome, found different conclusions. Our study as well as that of other researchers, seems to show that people with Down syndrome get Alzheimer’s disease at about the same rate as the general population.

They go on to say, however, that

Those that do develop Alzheimer’s disease however, get the disease on average 20 years earlier than persons without Down syndrome.

In other words, the percentage of persons with Down syndrome in their forties who have Alzheimer’s disease is about equal to the percentage of people without Down syndrome in their sixties who have Alzheimer’s.
 

So according to their years of experience in treating over 5,000 patients with Down syndrome, Kamdyn is not more likely to get Alzheimer's.  If she does develop Alzheimer's, however, it is more likely to present at an earlier age.

III. "Two syndromes"

They refer to there being "two syndromes":  people older than 30 and people younger than 30.  They say that with expectations, life expectancy, opportunities, and goals all improving in more recent years, it's almost like living in a different world. 

IV.  "Grooves"

"Grooves", as they call them, could also be called routines, set patterns, habits, obsessive compulsive behaviors.  Dr. Chicoine and Dr. McGuire have found "grooves" to be very common among patients with Down syndrome.  If you have seen Monica and David, you probably remember the scene where Monica was putting her things away in the bathroom drawer.  She carefully placed each item in a particular space of the drawer.  When everything was aligned just right, she slowly began to close the drawer.  She didn't just push it shut and move on though.  She continually opened and re-opened the drawer, even bending down to a crouch to make sure no items were shifted as she meticulously closed the drawer.  That is a "groove". 

While they may be viewed negatively, "grooves" may actually have many benefits.  The caregiver or parent can use the tendency toward "grooves" to encourage good habits, such as with healthy food choices, food portions, hygiene, exercise, and checklists.  Healthy food portions can be encouraged by developing a habit of checking them with a "portion plate":
 http://www.theportionplate.com/

For hygiene or daily chores and tasks, a checklist can be used.  By using a checklist, the individual is able to independently complete their tasks and check them on their own.  Making a set time for exercise and making a calender with pictures of each activity on the day will not only utilize the "groove" but encourage healthy exercise habits.  This is "self-promotion", because the individual is helping themselves.  By helping themselves, they achieve independence and self-esteem.  They can also set alarms as a reminder for things like taking medication. 


V.  Promoting Health

Dr Chicoine and Dr McGuire mentioned a study where the amount of calories burned while sleeping was measured in a person with Down syndrome and one without.  They found that people with Down syndrome naturally burn less calories, which means their metabolism is naturally slower.  Because of this, healthy eating habits and regular exercise are important. 

Another important aspect to health is sleep.  There should be a sleep routine with a consistent time for going to bed and waking up.  Sleep should also be disturbance free.  They told a story about a person with Down syndrome, who lived in a residential facility.  The person with Ds began having behavior problems during the day, and the caregivers were seeking medication.  After talking and asking questions, they discovered that the night crew at the residential facility would vacuum at night.  Duh!  They stopped vacuuming at night, and the resident with Ds didn't have an issue any longer.  As every mom knows, a lack of sleep can disrupt the mood and behavior of anyone, so treating sleep disorders is also important.

VI.  Interaction between physical and mental health

"Any and all behavior change should be viewed as a possible communication tool."  A change in behavior means that the individual is trying to tell you something. Become a sleuth and figure it out.  What in the environment has changed?  What events or circumstances have changed?  Is there a health problem? 

If there is a behavior problem:  "Assess the medical situation.  Optimize physical health. Assess for underlying/ accompanying medical conditions.  Treat medical and psychological conditions as needed.  Encourage healthy behavior." 

A health issue can cause behavior problems.  If a person is constipated and uncomfortable or has a gluten intolerance (Celiac disease) , they are likely to be moody or unpleasant.  If they have sleep apnea and are not sleeping, they are likely to be irritable.  If there is a mental health issue such as depression, this will also affect their mood.  The medical team and parents/caregivers have to become detectives in seeking out the root of the problem.  "All is not Down syndrome."  Issues should not be immediately dismissed, because the person has Down syndrome. Medication should be a last resort after all aspects and areas are explored.

VII.  In the community

Opportunities have improved for individuals with Down syndrome.  The employment rate, however, is very low.  Encourage the individual to find a job they enjoy. If there is not one available, look at volunteering at a hospital, fire or police department.  Doing for others gives motivation and promotes mental well-being. 

Church activities have proven to be among the favorite activities.  It provides a friendly environment and sense of community.  It also helps to soothe the blow of a death to know that the person is in a better place, Heaven.

"Integration and congregation"- The individual should be a part of the community as well as with people with disabilities.

"Life balance"- Appreciate the individual with Down syndrome, their unique characteristics and needs but balance it.  If your life is over-run with things such as therapy, and it disrupts your family, it is not positive for the family, and in turn, the individual with Down syndrome.