Categories of Care: What They Are, and Why They Matter

Using Help to Pinpoint Proper Care Following Brain Injury

After a brain injury, many survivors require help in one form or another. Some people require extensive support, while others need only a limited amount of services. This is often reduced with time and rehabilitation, but chronic complications with some injuries may create an increased need for assistance years after a diagnosis is made. Identifying the help that is needed is often a fluid, unfolding process; but being aware of the different categories of caregiving options can provide guidance when searching for the correct level of support.

In persons with brain injury, the amount of outside assistance required to carry out essential functions in everyday life is formally known as acuity. An interdisciplinary team of neurological professionals can help determine a person’s acuity by identifying what, if any, supports are needed. By reviewing documentation and collaborating with caregivers who provide supporting information about behaviors they observe from their clients or loved ones, risks, and care needs are identified relating to three specific areas:

  • Tasks of Self-Care: Personal care activities like dressing and bathing are often referred to as basic activities of daily living (BADL). More advanced tasks that require deeper thinking elements, such as scheduling or budgeting, are considered independent activities of daily living (IADL). If an individual needs assistance when carrying out either — or both — of these categories of self-care tasks, they are in need of what’s called attendant care. Attendant care provides hands-on assistance with physically managing daily routines that may be limited by weakness, fatigue, or thinking problems like memory or attention. Generally, attendant care is hands-on care provided to make up for physical limitations of an injury.
  • Replacement Services: Some survivors struggle with effectively carrying out typical responsibilities around the home, such as yard work, childcare, or home repairs. In these cases, they may need to assign or purchase these services for others to do. These needs are called replacement services, and are considered another category of caregiver support.
  • Protective Supervision: Brain injury can create an inability for individuals to recognize problems or advocate for help. Protective supervision is care that stands in reserve, monitoring for emerging risks, and stepping in with support when an injured person demonstrates behaviors that might lead to harm if left unchecked. Protecting a person from fall risk when he or she is unaware of poor motor skills, monitoring a meal for choking risks, or providing orientation support for a person with confusion are examples of why protective supervision is often necessary.

Acuity isn’t only about identifying the type of help an individual needs, however. Acuity also determines the coverage and intensity of this assistance. In other words, it identifies how much and how demanding the support can be.

Coverage refers to the portion of the day or specific times when help is needed. This may be expressed as supervision hours (e.g. up to six hours daily), or for specific events or portions of the day, like during mealtimes or supervision during waking hours only.

Intensity considers the demand of a caregiver’s attention. In hospitals and rehab facilities alike, this is often referred to as a ratio of supporting persons to the number of people they are helping. People with severe injuries may need someone to provide assistance exclusively to them (1:1 support), while others may be safe with an assistant who helps them along with two others at the same time (3:1 support). Intensity also factors in the distance these caregivers can be from their patients; whether that be to stay within an arm’s length at all times, or simply making sure an individual is within their line of sight.

Being familiar with each category of care — and identifying exactly where a patient falls within them — can greatly help when advocating for the correct and necessary support an individual needs. Professional assessments that pinpoint the precise what, when, and how much help a person requires, as well as careful documentation by healthcare providers and caregivers that support these findings, not only improves opportunities for ongoing coverage from funders, but also allows a person the best chance at success and fulfillment in their lifestyle following brain injury.

Martin J. Waalkes, Ph.D., ABPP(rp), CBIS-T
Director of Neuro Rehabilitation
Licensed Psychologist

Hope Network Neuro Rehabilitation

Being Mindful on Independence Day

Independence Day can be a time to celebrate for many. It is a time to spend with family, enjoy rest and relaxation, and even revel in the excitement of fireworks. For those with a brain injury, though, this holiday may look and feel very different.

Brain injury can bring many unpleasant symptoms, including physical changes (fatigue, pain), photophobia (light sensitivity), overstimulation to noises and crowds, and many emotional changes like anxiety and depression. Despite all of the changes that survivors feel on the inside, brain injury is often referred to as “an invisible injury” because others may not recognize the individual has sustained a brain injury. Many of the cognitive, emotional, and physical changes are unnoticeable to others on the outside. What used to be pleasant holidays and get-togethers, like Independence Day, may pose a variety of challenges for those with brain injury.

Some individuals with brain injury may even be living with a mental health condition known as Post-Traumatic Stress Disorder (PTSD). PTSD can develop after exposure to a traumatic or life-threatening event, such as a car accident, a fall, or combat-related incident in the military. PTSD may mean that someone experiences flashbacks, nightmares, or is overly aware of their surroundings. For Independence Day, fireworks may be an unpleasant reminder of the trauma they experienced.

The good news is there is hope for those with brain injury to endure and enjoy the holidays once again, with small changes to their usual traditions. Here are a few tips for individuals with brain injury, as well as their support system, for navigating this upcoming holiday.

Tips for Individuals with Brain Injury

  • Plan ahead: speak with family and friends to identify a safe and enjoyable way to enjoy the holiday
  • Manage fatigue: be well-rested leading up to the celebration and take breaks when needed
  • Reduce sensory overstimulation: taking noise-cancelling earphones, sunglasses, or hats may reduce the sensory input during fireworks and around large crowds
  • Choose your location carefully: if you choose to enjoy a live celebration of fireworks, choose a seat furthest away from the action
  • Explore your options: forego the live fireworks and watch them from the comfort (and quietness) of your home

Communication Tips for Brain Injury Supporters

  • Ask first: ask the person with brain injury their preference for activities for the holiday
  • Offer support: if they choose to sit out on certain activities, join them and provide company
  • Find a balance: compromise on traditions and swap out events with new activities your loved one is most comfortable with
  • Have a back-up plan: identify alternative activities if your loved one is not feeling up to the festivities at that time
  • Plan your escape: in the event that your loved one is triggered by something during the activity, have a plan for minimizing distress and moving to a more comfortable place

These are just a few ways for everyone to show their understanding and support for individuals with brain injury during this holiday season.

Dr. Amanda Lopez PhD, LP, CBIS
Psychology Supervisor
Origami Brain Injury Rehabilitation Center

Triangulation – What Is It and How Does It Apply to the Role of Caregiver

As caregivers, we are each drawn to the work we do for a reason. It may be because we simply like to help, have someone in our lives suffering from a disease or an injury, or are just stopping along the way to get to another spot. Whatever the reason, our jobs involve helping people. This can be very rewarding and enriching – it can also be troubling, stressful and distressing.

One tactic we come across in the world of therapy is triangulation – a form of manipulation where a person will not communicate directly with another person, instead they use a third person to relay the information to the second person – thus forming a triangle.

Triangulation is a concept primarily used in trauma-based therapy, taught to mental health professionals specifically trained to work with individuals who have experienced a traumatic incident, such as a car accident, fire, death of a loved one, etc. The way these individuals perceive life and relationships can be drastically influenced by that experience.

This has much to do with how the brain is wired, through social and emotional experience, and how social experiences have affected the individual. The act of triangulation can be intentional or unintentional – a very complicated cycle that negatively impacts everyone involved. Triangulation can be common in many aspects of our lives, but as a psychologist in the world of brain injury rehabilitation, I see it quite often.

To have a triangle, you must have three people: a victim, a persecutor, and a rescuer.

Victim: “The good guy”. No voice, no power. In this frame of mind, the victim does have power and a voice but are afraid to use them.

Persecutor: “The bad guy”. The attacker, the one who bothers the victim. It could include allowing the victim to experience the natural consequences of their choices or behaviors.

Rescuer: “The hero”. Swoops in and takes care of the victim’s problem – but at the same time ensures the victim never finds their own voice or personal power.

Let’s use the characters in the movie The Wizard of Oz as an example...

Dorothy – the victim. Riding in a house which drops and kills the Wicked Witch; obtains the Ruby Slippers.

Wicked Witch of the West – the persecutor. Unhappy about sister’s death, but more importantly – wants the Ruby Slippers.

Glenda the “Good Witch” – Dorothy’s potential first rescuer. Glenda is good, and tells Dorothy how to solve her problem but doesn’t do it for her.

In the movie, Dorothy picks up potential rescuers along the way – the Tin Man, the Cowardly Lion and the Scarecrow – all victims of their own life circumstances. Each of them do their best to rescue one another from their fears. We also see several persecutors for the victims, each of whom are looking for help/rescuing from the Wizard of Oz.

“When we cast ourselves in the victim role, we often feel helpless, hopeless, powerless, inept, etc. Sometimes, we may think “I can’t do it, I need you to do it.”

Fast forward to the Emerald City, where the best rescuer is believed to reside – the Wizard. Dorothy asks the Wizard for help, but is denied. [Oh, no, that isn’t supposed to happen – the Wizard (rescuer) is supposed to help me.] For the Wizard, his role quickly transitions from rescuer to persecutor.

“Now the victim has to find a new rescuer.”

In the case of the Wizard of Oz, that person becomes Glenda. Glenda helps Dorothy rescue herself by finding her voice and enacting her power to dissolve the witch with a bucket of water, and with three taps of the shoes, we see Dorothy back home.

“Rescuers, understand: if you are not able to rescue your victim, the victim doesn’t like how you rescued them, or other reasons – you – the rescuer is now becomes the persecutor.”

So, how do we break out of the triangle?

  • Support, don’t rescue. If someone comes to you to rescue them, assist them in figuring out how to solve the problem themselves.
  • Refer the victim back to the person with whom they are having the problem.
  • Help the victim find their voice. Role play what they could say by using the “I” message concept:

When your [insert description of behavior], I feel [insert name the emotion], I want [insert description of replacement behavior].

Example:

“When you act like a jerk, you make me angry, I want you to stop” will serve to incite more conflict versus help resolve. A different approach might be “when you keep your headphones on when I am trying to talk to you, I feel frustrated. I would like you to take the headphones off.”

We can also use this method to communicate positives. “When you take off your headphones when I’m trying to talk to you, I feel appreciative, please keep it up!”

Some helpful reminders:

  • When we say “I feel,” we’ve taken responsibility for our own emotions, versus when we say “you make me feel,” we give all the power to the other person.
  • Make sure the description of the behavior is without opinion or judgement.

References:

Kimberly McGowan, MA, LLP, CBIS
Limited License Psychologist
Hope Network Neuro Rehabilitation

Celebrating Brain Injury Awareness Month

Brain injury is often referred to as an “invisible” injury or disability since the effects of the injury are not always visible or immediately evident. However, to anyone who has suffered a brain injury, or to those that care about someone who has, the effects of brain injury are complex and can pervade many aspects of the individual’s life. Brain injury can be difficult to understand, the symptoms can be significant, and the rehabilitation process can be extensive.

We are proud to join brain injury survivors, caregivers, and supporters in celebrating Brain Injury Awareness Month. For decades, the Brain Injury Association of America (BIAA) has led a nationwide public awareness campaign during the month of March to de-stigmatize brain injury through outreach and education.

According to the Brain Injury Association of Michigan (BIAMI), in Michigan alone, 58,500 people sustain a brain injury each year. The truth is that no one plans for a brain injury, but brain injuries can happen to anyone, at any time. Please join us this month as we spread awareness and educate others on the definition of brain injury, its causes, and where to seek proper rehabilitative care.

What is a Brain Injury?

Just as there are no two people alike, no two brain injuries are the same. An acquired brain injury is an injury to the brain that has occurred after birth; these injuries are not a result of heredity, nor are they congenital or degenerative. There are two types of acquired brain injuries, non-traumatic and traumatic.

A non-traumatic brain injury is caused by damage to the brain by internal factors, such as lack of oxygen, exposure to toxins, pressure from a tumor, and so on. A traumatic brain injury is an injury to the brain that is caused by an outside force or impact that is sudden and damaging.

Common Causes of Brain Injury

  • Stroke
  • Anoxia/hypoxia (lack of oxygen to the brain)
  • Neurotoxic poisoning (ingestion of insecticides, solvents, lead)
  • Tumors
  • Virus/infection
  • Seizures
  • Falls
  • Motor vehicle accidents
  • Struck by an object
  • Sports
  • Improvised Explosive Device (IED)
  • Assault

Brain Injury Recovery

Following a brain injury, it is imperative to receive the proper rehabilitative care. Brain injury survivors can experience an array of cognitive, physical, and emotional/behavioral challenges. These symptoms can often concur feelings of hopelessness in survivors and caregivers, but there is hope.

The goal of brain injury rehabilitation is to maximize function and encourage survivors to achieve their fullest potential. Origami Brain Injury Rehabilitation Center brings together a team of experts from the following disciplines including physiatry, psychiatry, psychology, physical therapy, occupational therapy, speech-language pathology, recreational therapy, rehabilitation nursing, vocational, and more in order to tailor a care plan to the needs of each survivor. The rehabilitation journey begins with a thorough assessment to identify the individual’s exact needs and goals. At Origami, survivors and their support systems are an essential part of the interdisciplinary team and the rehabilitation journey.

It is important brain injury survivors and caregivers know they are not alone on this journey. If you have a question about brain injury or if you are interested in learning more about brain injury rehabilitation, please visit our website at origamirehab.org or call us at 517-336-6060. For those looking for support, visit BIAMI's Support Group page or call them at (800) 444-6443.

Origami Brain Injury Rehabilitation Center is a 501(c)(3) non-profit organization located in Lansing, Michigan. Origami provides comprehensive rehabilitation care for survivors of brain injuries and their families. Through their compassionate and innovative services, Origami creates opportunities and transforms lives.

How to Decrease Your Risk of Falling Following a Brain Injury

Along with ringing in the New Year, January is sure to bring plenty of snow and ice! The onset of slippery conditions can cause an increase in incidences of falls. Though the majority of falls only result in mild injuries such as muscle soreness or bruising, approximately 10% of falls result in a trip to the emergency department. Some falls may be unavoidable, but being informed of the risks and actively making changes can reduce the risk of falling. With 30-65% of people with brain injuries reporting balance deficits at some point during recover, it is especially important for survivors to be aware of the facts that make them more susceptible to falling.

Factors to Consider:

Are you over 65 years old? Approximately 1 out of 4 people over the age of 65 experience a fall every year, with falls being the leading cause of injuries in this population.

Do you take multiple medications? Individual medications or interactions between multiple medications may cause an increase in risk of falling. Researchers have found that certain classes of medications including sedatives and antidepressants may contribute to increased falls risk. If you notice an increase in falls with the start of a new medication, be sure to contact your physician.

Have you fallen more than once in the last year? Previous falls are an indicator of an increased likelihood for subsequent falls. If you have previously fallen it is very important to take preventative measures to avoid reoccurring falls.

Do you have vision deficits? Vision is an important component of balance, and having vision deficits significantly increase the risk of falls. Blurred vision, double vision, and other visual impairments are common after a brain injury; therefore, it is important to follow up with your optometrist or ophthalmologist if you suspect any changes in your vision. They may make changes to your eye glasses or refer you to an occupational therapist for vision therapy.

Do you have impaired sensation in your legs? It is common to experience decreased sensation or proprioception, the perception of movement and positioning of our body, following a brain injury or due to other chronic conditions such as diabetes and peripheral neuropathy. This can cause individuals to trip on objects or lose their balance.

Are you depressed? Studies have shown a correlation in increased falls with depression likely due to cognitive, sensory, and motor changes that may occur with brain injuries. Consider talking to your physician, social worker, or counselor if you believe you are experiencing depression.

Do you experience dizziness? Dizziness can be a symptom of many conditions including damage to the vestibular system, changes in vision, medication symptoms, or other medical conditions. If you are experiencing dizziness it is advised to consult with your physician. They may refer you to an Ear Nose and Throat Specialist, ophthalmologist or to a vestibular physical therapist depending on the cause.

Are you mostly inactive? A decrease in activity can lead to poor cardiovascular endurance and flexibility, as well as weakened muscles, which can increase your risk for falls. Ask your physician if you are able to participate in a regular exercise program, and consider consulting a physical therapist or another expert for a custom exercise program to meet your needs and goals.

Do you experience incontinence?Incontinence is associated with an increase in falls due to impulsive and unsafe behavior occurring when a sudden urge to urinate occurs. Depending on the type of incontinence and the severity, different techniques such as utilizing caregiver assistance, bed pans, pads, or Kegels may be appropriate. A pelvic floor specialist can aid with decreasing episodes of incontinence.

If you answered yes to any of these questions, you might be at an increased risk for falling. Many brain injury survivors may have answered yes to many of the above questions; because of this, individuals who have experienced a brain injury have a significant increased risk of falling. Although some risk factors such as age are out of our control, many others may be modified to reduce your risk. If you believe you or a loved one is at an increased risk for falling, there are some simple modifications that can be made to decrease the risk:

  • Remove tripping hazards such as rugs or uneven thresholds in your home
  • If you use an assistive device, make sure you are using it correctly
  • Wear supportive shoes with a rubber sole to prevent shuffling feet and slipping.
  • Use night lights in order to increase visibility at night. Alert systems can be used for individuals requiring more assistance.
  • Shovel snow and apply salt to reduce the risk of slippery sidewalks

These tips can reduce your likelihood of falling and incurring an injury. If you have notice any recent changes or have questions regarding your balance, please contact your physician.

Emily Wolf, PT, DPT

Physical Therapist, The Lighthouse Neurological Rehabilitation Center

References

  • Kallin, Kristina, et al. "Predisposing and precipitating factors for falls among older people in residential care." Public health 116.5 (2002): 263-271.
  • Lord, Stephen R., Hylton B. Menz, and Catherine Sherrington. "Home environment risk factors for falls in older people and the efficacy of home modifications." Age and ageing 35.suppl_2 (2006): ii55-ii59.
  • Peterson, Michelle, and Brian D. Greenwald. "Balance problems after traumatic brain injury." Archives of physical medicine and rehabilitation 96.2 (2015): 379-380.
  • Thurman, David J., Judy A. Stevens, and Jaya K. Rao. "Practice parameter: assessing patients in a neurology practice for risk of falls (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology." Neurology 70.6 (2008): 473-479.
  • Woolcott, John C., et al. "Meta-analysis of the impact of 9 medication classes on falls in elderly persons." Archives of internal medicine 169.21 (2009): 1952-1960.

Emily graduated from Arcadia University with a Doctorate of Physical Therapy. Her academic focus was primarily on treatment of adolescents and adults post-concussion. She has been practicing as a physical therapist at The Lighthouse Neurological Rehabilitation Center in Kingsley, Michigan since 2017.

It’s the most wonderful time of the year…or is it?

Some helpful tips for holiday cheer following a TBI

The holidays are fast approaching and are typically associated with excitement, family gatherings, music, delicious food and lights! While all of these aspects of the holidays are wonderful, they can be incredibly challenging for someone with a traumatic brain injury (TBI) to navigate and manage.

Various symptoms of TBI can impact how one perceives the holidays: experience of sensitivity to light and sound, increased headaches or migraines, issues with processing information, challenges with energy levels, struggles with accurately interpreting social cues, trouble with controlling emotions, and difficulty with planning or initiation.

There is hope! Many steps can be taken to ensure the holidays are enjoyable for individuals with TBI and their family members. Here are a few identified by Brainline.org’s online community:

  1. Identify in advance - a quiet place to go at gatherings if you are feeling overwhelmed. This gives you a chance to take a break, and lets your loved ones stay involved in the festivities.
  2. Avoid crowded stores and order gifts online instead.
  3. If you are shopping in stores, remember to make a list in advance and plan your trips on week days - either early in the morning or late at night when there are fewer crowds.
  4. Wear a cap with a brim or lightly tinted sunglasses to minimize the glare of bright lights in stores or flashing lights on a tree.
  5. Wear noise-reducing headphones or ear buds. These are also great gift ideas for loved ones with TBI if they don’t already have them.
  6. Ask a friend to go with you to stores or holiday parties. They can help you navigate crowds and anxiety-producing situations.
  7. Plan in advance as much as possible. Ask your hosts what their plans are so you aren’t surprised by anything.
  8. Volunteer to help with the holiday activities that you enjoy the most and are the least stressful for you.
  9. Remember to ask for help and accept help if it is offered to you.
  10. Ask someone you trust to help you with a budget to avoid overspending on gifts.
  11. Take a nap if you need a break.
  12. Remember that it’s okay to skip the big parties and plan to celebrate in a way that makes you comfortable and happy.
  13. Check in advance to see if fireworks are part of outdoor celebrations - and skip them if they make you uncomfortable.
  14. If flashing lights bother you, ask your friends and family to turn off the flashing feature on Christmas tree lights or other decorations when you visit their homes.
  15. You can let your host know in advance that you may need to leave early. It will help you feel comfortable if you need to get home or to a quiet place, and it can also help avoid any hurt feelings.

The more support that family and friends can offer to a loved one when they are struggling or identifying what they may need for relief, the more successful they will be with effective implementation of these strategies. Here are a few tips:

  1. Have this list handy to help remind your loved ones of skills they can engage in, while also increasing your own awareness of what can be done to help.
  2. Keep an eye on them. If you notice they are disengaging, demonstrating signs of pain (i.e., holding their head, closing their eyes, tensing their muscles) or struggling with keeping up in conversation, gently suggest utilizing some strategies for relief.
  3. Be flexible. Often times your loved one may not know exactly how an environment will trigger them until they are there, even if they plan for it. Be open to plans changing a bit.
  4. Be available. As amazing as the holiday season can be, it will most likely pose some of the greatest challenges for your survivor. They may rely on your support to make it through.
  5. Ask for help yourself. You do not have to be the only one providing support. Let others know when you need a break.

Hopefully these tips will promote a safe and happy holiday season! If you need more support, consider reaching out to one of these local resources:

https://www.biami.org/

https://www.apa.org/helpcenter/index.aspx

https://www.brainline.org/

https://www.origamirehab.org/

Reference:

  • 15 Tips for Surviving - and Enjoying - the Holidays with Brain Injuries. (2013, November 21). Retrieved from https://www.brainline.org/article/15-tips-surviving-and-enjoying-holidays-brain-injury

Dr.Jayde Kennedy, PhD, LP, CBIS
Clinical Psychologist, Origami Brain Injury Rehabilitation Center

Dr. Kennedy graduated from The Chicago School of Professional Psychology in Los Angeles with a PsyD in Clinical Psychology in 2014. Her academic focus was primarily on treatment for children and adolescents. Her practicum, internship, and fellowship experiences allowed her the opportunity to work with a variety of populations including children, adolescents, teens, adults, and geriatrics. Dr. Kennedy has practiced in several settings including, outpatient, inpatient, community mental health, and residential treatment utilizing individual and family therapy modalities. She has been a member of the Origami Brain Injury Rehabilitation team since 2015.

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