Question:
Can you provide specific mental health resources that would address challenges related to alcohol abuse by young adults with Down syndrome (an independent college student)?
Answer:
The terms alcohol abuse and alcohol dependence are now referred to as alcohol use disorder.
There are specific criteria for alcohol use disorder in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5). These have been modified in the Diagnostic Manual – Intellectual Disability: A Textbook of Diagnosis of Mental Disorders in Persons with Intellectual Disability (DM-ID-2). The DSM-5 criteria for alcohol use disorder with DM-ID modification (in parentheses) are:
- Using larger amounts of alcohol or using for a longer time than intended.
- Persistent desire or unsuccessful attempts to cut down or control use (lack of access in people with ID may make it difficult to assess this criteria).
- Great deal of time is spent obtaining, using, or recovering.
- Craving or a strong desire or urge to use (this may be difficult to assess depending on verbal capabilities).
- Failure to fulfill major roles at work, school, or home (this needs to be modified to reflect the individual’s functional level).
- Persistent social or interpersonal problems caused by alcohol abuse.
- Important social, occupational, recreational activities given up or reduced.
- Use in physically hazardous situations.
- Use despite physical or psychological problems caused by use (this may be limited by supervision before it reaches this point).
- Tolerance -it takes a higher dose to obtain the same effect (this may be limited by supervision before it reaches this point).
- Withdrawal -physical or psychological effects experienced when alcohol use is stopped or reduced (this may be mistaken for aberrant behavior if alcohol abuse is not recognized).
- The manuals also include severity criteria: mild (2-3 symptoms/criteria), moderate (4-5), and severe (6 or more).1
Risk factors for alcohol use disorder in people with intellectual disabilities include:
- Psychiatric illness
- Lack of daytime activities
- Male gender
- Forensic history (legal issues)
- Living independently2
As people with Down syndrome (DS) and other intellectual disabilities (ID) have become more independent in the community, the perception is that alcohol use disorder has become more common in this population. An article by the Recovery Village Drug and Alcohol Rehab estimates that 5% of people with ID have substance use disorder.3
A research article from the United Kingdom that reviewed the findings of a variety of studies reported lower prevalence than the article referenced in the previous paragraph.2 They also found that those with a mild intellectual disability had a higher prevalence than those with moderate to profound intellectual disability. They reported a prevalence of alcohol/substance use disorder of 1% on clinical diagnosis. In the mild intellectual disability group, 1.8% had an alcohol/substance use disorder. In the moderate-to-profound intellectual disability group, 0.5% had an alcohol/substance use disorder.
One proposed explanation for the higher prevalence of alcohol use disorder in individuals with mild ID is that they typically have a greater level of independence and are more likely to have access to alcohol.
Even if the prevalence is low, the consequences of alcohol use disorders in people with ID are significant. It can affect community living, cause physical health issues, and exacerbate other health issues (e.g., seizures, gastroesophageal reflux or GERD, and dementia).
In our experience, most of our patients and their families report the person with DS does not drink at all. Some drink relatively small amounts occasionally. Rarely, it is reported that a person with DS has drank to inebriation.
In over 30 years of experience in our clinic and over 6000 individuals with DS, I am aware of three individuals with alcohol use disorder in our practice. All three had mild intellectual disability and were independent. In all three, other people were influencing them to drink larger quantities of alcohol. For example, one person got off the bus one stop early on the way home from work and stopped in a local pub where other patrons freely purchased drinks for him. These three individuals were generally reported not to be drinking in other settings. They did meet criteria for alcohol use disorder due to drinking larger quantities, some degree of craving (at least in the social setting where alcohol was available), the effect it was having on their health, work, socialization, etc., and other criteria.
Prevention and Treatment
The need for helping people with ID develop social skills to optimally participate in social situations was discussed in this paper as one way to prevent alcohol use disorder.4
According to the article on the Recovery Village website referenced above, one treatment option is modified Alcoholics Anonymous (AA). In this treatment, addiction counselors use modified techniques that, “Instead of focusing on the concept that one is powerless over substances, it emphasizes being capable and empowering people to make changes. Those who participate may also have coexisting mental health disorders. So, in addition to focusing on recovery issues, they learn about the importance of taking their medication and work on self-esteem and social skills.”3
A variety of articles describe that the traditional AA model is difficult for many people with ID because of abstract concepts and the reading level required for the program.
The Recovery Village article also noted that medication-assisted treatment is another option. There are now medications available that can assist in reducing cravings and the rewarding effects of drinking alcohol.3
Additional treatment suggestions include:
- Addressing other issues that may be contributing
- Sessions that are more frequent, longer, and well-structured
- Individual sessions and group sessions
- Easy-to-read materials
- Video vignettes
- Repetition
- Positive reinforcement
- Addressing social skills and refusal skills4
In our limited experience, a “social solution” typically resolved the issue. Family and/or support staff helped the individual manage the situation by altering the social settings and activities. For example, the person stopping at the local pub on the way home no longer took the bus home and was picked up at work. Interestingly, in two of the three individuals, once they were no longer going to the social setting where the drinking was occurring, they no longer reported craving alcohol. One individual did report ongoing craving even when they no longer went to the place where the drinking had occurred.
This treatment does create an ethical dilemma. The management of a person with ID who has alcohol use disorder creates the need for a decision to balance a person’s right to make decisions about their life, including negative ones, against the duty of care in protecting a group of vulnerable people from potential harm.
Additional resources can be found in the articles referenced in this answer. In addition, this reference titled “Mental and Substance Use Disorder Treatment for People With Physical and Cognitive Disabilities” from the Substance Abuse and Mental Health Services Administration has a number of recommendations and referral resources.
References
- Fletcher RJ, Barnhill JB, Cooper S, eds. Diagnostic Manual-Intellectual Disability: A Textbook of Diagnosis of Mental Disorders in Persons with Intellectual Disability (DM-ID-2). NADD Press; 2016: 568
- Williams F, Kouimtsidis C, Baldacchino A. Alcohol use disorders in people with intellectual disability. BJPsych Advances. 2018;24(4):264-272. doi: 10.1192/bja.2017.37
- Deveney R, ed. Substance use & intellectual disabilities. The Recovery Village; 2020. Accessed at https://www.therecoveryvillage.com/drug-addiction/related-topics/substance-use-intellectual-disabilities/
- Quintero M. Substance abuse in people with intellectual disabilities. Social Work Today. 2011;11(4):26. Accessed at https://www.socialworktoday.com/archive/071211p26.shtml