Home Again ... Perhaps for the First Time in Fifty Years

Discrimination and separation for people with intellectual and developmental disabilities (I/DD) is one of the least addressed in our public and societal dialogue.  The State of Oklahoma is making a significant move toward dealing with this by closing the state institutions that house people with I/DD.

Historically, people with I/DD have been warehoused away from other people and communities via state and private institutions.  Bios has served people with I/DD in their own homes and communities for close to 25 years and we find it enormously rewarding to help people who traditionally and historically are marginalized by the rest of the world become valuable members of their communities. However, there is much work to be done to help people understand and embrace people with I/DD and citizens of Oklahoma have a great opportunity to be community leaders in this.

Soon, communities all over Oklahoma will gain new neighbors. Most of these new neighbors are in their 50s, but have spent their entire lives in Northern Oklahoma Resource Center or Southern Oklahoma Resource Center, institutions for people with Intellectual and Developmental Disabilities.  For the first time in their lives,  they will have the opportunity to live in their own homes, go to bed and wake up when they want to, rather than when they are "scheduled" to, eat the foods they enjoy, rather than what's on the menu for the day, choose how they way they want to spend their time, rather than doing what is on the calendar at the time.  They will be able to watch what they want on TV, listen to the kind of music they enjoy, have their home decorated and furnished to their personal tastes and desires.

At the same time they are entering a new and exciting time in their lives, a change of this magnitude will be terrifying, as it would be for any of us.  Here's where Oklahoma citizens can help.  These new neighbors need to be loved by their communities.  They need to be loved by their neighbors.  They need friends.  They need community.  It would be an amazing outreach for Oklahomans to commit to "buddy up" with these neighbors to make their transition to their new lives and the rest of their lives rich and connected to other people.  So, if you hear of a someone new to your community, transitioning from SORC or NORC, be the first to welcome them.  Be the first to get to know them.  Be the first to love as you want to be loved.

Dealing with Challenging Interactions in Dementia

Even with we love someone, dealing with challenging behaviors can be aggravating, frustrating and just plain sad.  Approaching the challenge in a thoughtful way can make the experience less negative for everyone involved.

It's important to recognize that most challenging behaviors are a result of fear, frustration, anger or physical pain or discomfort.  Working to identify the cause can help us diffuse the behavior.  Physical pain and discomfort should be ruled out first.  For people who have difficulty communicating effectively with words, we must rely on non-verbal signs and signals.  Observing facial expression, body position and carriage, degree of muscular tension, uncharacteristic actions such as pacing, and hand wringing can give us clues to physical causes.

After ruling out physical causes, we can utilize proactive strategies to reduce the likelihood of a challenging interaction escalating to violence.  Try some of these strategies to diffuse challenging interactions.

Improve the Interaction

• Abandon the task and focus on the person.  Sometimes people just need the loving presence of another person, without the pressure of having to complete a task.
• Change expectations.  If you're working on something the person is unable to do for him/herself, increase the amount of assistance you provide to help complete the activity.  You may even need to do the activity for the person, allowing him/her to be present with you while you do it. 
• Improve/vary rewards.  What you find motivating and inspiring may not be the same as what the person enjoys.  Make sure you are considering her perspective.
• Validate feelings.  Fear and frustration is a common cause of challenging interactions with people with dementia.  Avoid dismissing or disagreeing with their feeling, rather work to validate them, even if what they are feeling does not make sense to you.
• Modify your tone.  Warming your tone of voice and slowing your rate of speech can go a long way in making a person feel safer.
• Change your energy level.  Generally, when we're dealing with a person with dementia, we need to slow down.  Avoid rushing.  Focus on the moment and be fully present.  However, there are times when the need energy change is to speed up.  If the person we are supporting is bored or agitated, we may need to put some "pep in our step."

Reduce the Demand

• Involve choices, but not too many.  People want to do things they like and find comforting, but providing too many choices can be overwhelming and stressful.
• Modify the environment.  Change the lighting, reduce ambient noise (turn off music, television), eliminate clutter.
• Improve prompts. Use words that are easy to understand; cue with positive touch; hand over hand may be needed.
• Take a mini-break.
• Abandon the task. You may need to bail out of the interaction if it is specifically your presence that seems to be causing the distress.

Hang in there  Sometimes we just have to patiently ride it out and be fully present with the person as s/he moves through her difficult time

When dealing with challenging interactions, the key is being at our very best when the people we are supporting are at their worst.  We must be gentle, patient and kind and focus on positive interactions with few demands.

Gentleness and Supporting People with Dementia

Intellectually, we know that being gentle with people is the both the right and the healthy thing to do.  It's good for the people we love and support and it's good for ourselves.  However, putting gentleness into action is not always so easy.  Being busy, rushed, tired, stressed and stretched can result in our doing and saying things that are less than gentle and border or harsh or violent. 

A school of thought in the disability world, described by John McGee is called “Gentle Teaching.”  Although we don’t generally consider the supports we provide to people with dementia, “teaching,” per say, the principles of Gentle Teaching are valuable principles to bring to our work with people with dementia. 

McGee describes A Spirit of Gentleness as being about …

·         Our non-violence

·         Our sense of social justice

·         Our expression of unconditional value

·         Our warmth to those who are cold

·         Our creating an environment where people feel Safe, Loved, Loving and Engaged

·         Our creating an environment of companionship with people who are marginalized

·         Our promoting community in a way that is meaningful for the person we support

·         Our decision to be side-by-side with those who are devalued

(Adapted from John McGee’s: A Spirit of Gentleness)

The Value of Community

Human beings are hard-wired to be "in community" with other humans.  For those who are extroverts, "community" is large and diverse, while the introverts among us may have smaller, sometimes less diverse, yet often deeper or more intimate communities.  Our communities are comprised of friends, family members, acquaintances, colleagues and people with whom we do different types of business.  Regardless of the size or the make-up of our "communities", they all have something in common--they are ours, we have chosen them and they represent what is important to us, as individuals. 

When people are required to move into an institutional living situation, like a nursing home, their opportunities for creating and enjoying communities of their choice are significantly limited.  This can, and usually does, have a significant impact on their perceptions of themselves as valuable humans, as well as others' perceptions of their value to the world. 

Isolation can occur at home as well.  As caregivers, we have a responsibility to work hard to identify the things and people that are Important To the people we care for.  We must help them find ways to stay “in community” with the people they love and enjoy.  At the same time, we should recognize that the way people engage with others may be different than when they were younger.  The types of activities they want to share may change.  The amount of time they share with others may need to be in shorter intervals.  The engagement may need to be less rigorous.  The environment may need to be less distracting.  It may be different, but it’s not less important.  What are you doing to help the people you love and support stay “in community” with people they love?