Caring for family members who are mentally disabled can be a difficult challenge. It can also be a rich blessing as you grow to know and understand the needs of the person for whom you provide care. Understanding how to make it less stressful and more enjoyable is a matter of knowing how to read your loved one to prevent problems before they get out of hand.
Anyone who is responsible for the daily care of a mentally disabled person can attest to the fact that one of the biggest challenges of the task is the behavioral issues that tend to stress the family out and wear down patience fast.
As a Behavior Analyst, I specialize in helping family members understand and address behavioral aspects of everyday life, for people with disabilities. The range of mental disability is broad. Many individuals who are mentally disabled are non-verbal, some are blind, deaf, autistic and developmentally delayed. Many people who are mentally retarded are also diagnosed with mental illness. Chances are the person you care for falls within this broad range of mental disability.
Some people might make the assumption that people with disabilities act out because they are retarded and that is the way retarded people act. They make the same assumption with mentally ill people too and the list goes on and on. Truly, the reason we see increased behaviors among this population of people is because they are communicating with us in the only way the know how. To dismiss their behavior as merely a description or symptom of their disability without understanding the function of the behavior is a thinking error. It will also impact the quality of care and the quality of the relationship that the care taker has with the person with the disability.
Discovering the cause of behavior
So, how do you deal with a loved one who has special challenges, especially with the behavioral aspects that are typically part of every day life? First of all, it is important to realize that all behavior is a form of communication. Most of what we communicate is non-verbal. For people, who have limited verbal abilities or who have mental illness along with developmental delays, you must understand why they are doing a specific behavior before you can address it.
Keep a written record
One easy way family members can learn why their loved one is behaving a certain way is to keep track of what happened before and after the behavior. Most people think they know why a person is acting a certain way just by dealing with them on a daily basis. However, believe it or not, although it appears to look like a behavior is a result of one thing or another, it may actually be something completely different than expected.
Observation of a person's daily life an important tool to knowing a person, but the pitfall is that it is also very subjective. What looks a certain way to mom may look different from dad's perspective. So taking an objective approach is more accurate, and in the long run, faster to nail down the true nature of the behavior.
So how do you objectively discover the purpose of a behavior? The best way is by conducting a functional assessment. If you have access to this type of service I recommend it, but most families don't have the means or knowledge of how to conduct or interpret a functional assessment on their own. However, by simply keeping track of a behavioral incident you can develop a better understanding of the purpose of a behavior. This also is very valuable information that you can share with the family doctor or Psychiatrist who is prescribing medications often times to help with behavioral issues as well.
What to record and why
You typically need to exist in the same environment with the person you are caring for and preventing behaviors from occurring is key to reducing stress and improved coping strategies. Caring for a mentally disabled person is challenging so why not make your job easier. Looking for the message behind the behavior is the fastest way to a peaceful co-existence within your home life.
What you are looking for by writing down what happened before and after a behavioral incident is what caused the person to respond or act out and what part the consequence plays in reinforcing or eliminating the behavior. If the person is rewarded in some way for the behavior then it increases the likelihood it will continue. What we are talking about here is a reward in terms of what the mentally disabled person considers a reward or pay off, not what you consider a reward. You want to discover if there is anything occurring after the behavior that could be a reward or a way of avoiding or escaping a particular situation. You are really discovering behavior patterns and factors that increase or decrease them.
Learning to communicate effectively
People have two-way communication. One way is called expressive and the other is referred to as receptive. Most people with developmentally delayed disabilities have better receptive than expressive communication. That is, they understand more about what you are saying to them then they can communicate what they need to say to you verbally. This sets the stage for communication on another level which is primarily through non-verbal means, including what looks like behaviors.
For example, If the TV is loud and the room is crowded with people watching a movie, a behavioral outburst might be telling you, Hey, it is too loud and crowded in here for me, I want out! If the volume is turned down and people are moved away, giving the person more space and the behavior stops, you know you are on the right track of understanding why the behavior occurred.
In the future, armed with that knowledge, you can make arrangements to adjust the environment so that the noise level and crowded conditions will not pose a problem, making a behavioral outburst less likely to occur. Without writing information down to look at the factors before and after, you might be tempted to think he didn't like the movie or simply wanted attention. However, you'd be guessing, and missing the real message behind a behavioral issue only prolongs the stress and frustration.
Factors unique to mentally disabled people
There are internal and external factors for why people with disabilities react the way they do. A person who is mentally disabled is wired in such a way that they tend to be more sensitive to their environment.
A) External factors:
Avoid environmental extremes. Loud noises, strong smells, lighting, temperature extremes and overcrowding are typically issues to consider in making adjustments in your home. People with mental disabilities are more sensitive to their environment than other people sharing the same environment.
B) Internal Factors:
If the person you care for has a toothache, headache, or a pain they can't communicate about verbally, you'll notice a difference in behavior. After awhile you can typically tell what a person does when they don't feel well. However, assessing the person medically is important because people who are in pain or are ill don't respond well to redirection or punishment. The very best behavioral interventions in the world are out the window when you are up against medical issues. You must address medical issues first.
C) Schedules and Caretakers
Most people with mental disabilities respond well to routine schedules and can react immediately and harshly to changes. Even though the person you care for may be non-verbal doesn't mean he or she doesn't need you to explain any changes in the daily routine prior to the change. You can reduce a great deal of anxiety by preparing your loved one ahead of time so they can anticipate changes. Having said that, some people with mental disabilities will perseverate too much if you tell them about changes too far in advance. Use your best judgment, if you think the person will get stuck thinking about and worrying excessively over the change, don't tell them too far in advance.
Just as we have preferences for being with certain people so do people with disabilities. When it comes to making changes in the role of caretakers, having the person who is stepping in for the regular care taker meet and get to know the disabled person is very important. It is best to help the person who is being cared for to get to know the new care takers gradually, with the regular care taker present, before having them provide care alone. If your goal is to help integrate a person into a group setting, visiting the group with him or her prior to the person being left alone is strongly advised.
D) Unconscious communication
We communicate subconsciously with each other all the time. If you are having a bad day, if your interactions with other people in the home are stressed, or you don't feel well chances are the person you are caring for is going to pick up on that. They will likely respond to that which will increase the drama. As a care taker, take time to care for yourself. Get enough sleep, eat well and schedule time to get out and do activities you enjoy. If you don't have other family members who can help, often times there are church programs or agencies, such as Easter Seals, that can help with giving you relief by providing respite care.
E) Use Good Strategies of Interaction
Control Tactics and Punishment don't work. Most care takers think of themselves as parents and use the tactics their parents used, even if those tactics weren't good ones, because those are the only tools in their toolbox. If you are, in fact, the parents of the mentally disabled person, be careful not to adopt strategies your parents might have used on you. Because I said so isn't a strategy that works in getting a person with a disability to comply with what you want them to do.
Understanding how to redirect behavior is key to getting compliance. For example, saying 'No, you can't have that now, we need to get to school or we will be late!' is not as affective as saying, 'I'd love to give you that, as soon as we get home from school you can have it.' They hear you say what they want but they are motivated to do what you need them to do in order to get it. This way you create team work and less friction and drama in your daily life.
A person with a disability should be given appropriate options when you need to redirect them. Sometimes making a picture board that represents favorite options of activities or objects they frequently request helps because they can point to the picture they want when choosing options. Telling them to Knock it off and go to your room doesn't work like it might with other kids. Saying, Do you want to go to your room and listen to music or watch your Disney movie? works better to redirect them.
Putting it all together
Caring for a person with a mental disability is like a dance. The better you understand the type of dance, tempo and the more you practice moving together the better the results. Similarly, the more you understand behaviors, and what they communicate, you can better plan the dance of your daily interactions with the person with whom you are caring. In doing so, you can reduce stress and create a balance you never knew was possible.