Graphic reads Guide to Spatial Neglect For Stroke Survivors and Family Caregivers

Guide to Spatial Neglect For Stroke Survivors and Family Caregivers

Graphic of skeleton head depicting how a right-sided stroke may affect the brain

Spatial Neglect is a Syndrome That Commonly Occurs After Stroke

A stroke occurs when a blood vessel that carries oxygen and nutrients to the brain is either blocked by a clot or bursts (or ruptures). Stroke affects different people differently depending on where the injury is in the brain and what neural network is impaired. Spatial neglect results from a brain injury that impairs the neural networks of spatial attention and related motor and cognitive functions.

Two Asian woman, younger one holding arm of older one to help her walk

Symptoms of Spatial Neglect, Related Deficits, and Difficulties

Spatial neglect affects a person’s ability to pay sufficient attention to the surroundings and body parts on their more affected side after stroke. Put simply, after a stroke their left limbs may be more affected than their right, leading to a tendency to overlook, or “neglect,” the left side of their surroundings.

Individuals with spatial neglect primarily focus on their less-affected side, oftentimes, they lack full awareness of their more-affected side and do not consciously neglect that spatial orientation.

Their concept of “left” has been impaired. It is usually ineffective to ask a person with left-sided spatial neglect to look to the left because the lateral or horizontal range of their perceived world has been reduced, especially on the left side.

Left-sided spatial neglect is more common than right-sided spatial neglect. This is related to the distribution of the attention networks in the brain, which are asymmetrically larger and more connected in the right hemisphere.

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Top photo: Woman sitting crookedly in wheelchair, looking right, with left leg dragging behind her.  Bottom photo: Man looking in a mirror, shaving only right side of his face

Additional Challenges of Spatial Neglect

People with spatial neglect frequently encounter additional challenges, including:

Struggling to attend to stimuli on the side of the body that has been more affected by the stroke, resulting in diminished awareness of the left limbs and surroundings compared to the right.

An impaired ability to fully perceive and process environmental stimuli despite intact sensory functions such as vision, hearing, and touch. Consequently, they face an increased risk of falls and tend to show less favorable outcomes in rehabilitation compared to individuals without this condition.

An inability to make spontaneous or voluntary movements toward their affected side of space despite unimpaired physical ability, often exhibiting gaze preference towards their good side and limited movements towards the affected side. This may lead to underutilization of weaker limbs, even when motor function has improved.

Seeming to "forget" to use their more affected arm or leg, even after those limbs have regained strength and mobility.

Lacking awareness of their own symptoms and the potential consequences of their deficits. This may hamper their ability to manage their own care and pose challenges in therapy participation, engagement, learning compensatory strategies. It could also delay seeking appropriate treatment.

A person with left-sided spatial neglect may:

  • Seldom turn their head toward the left side
  • Experience difficulty finding objects on their left side
  • Bump into things on their left side when moving around indoors
  • Forget to lock their wheelchair on the left side
  • Shave or put on makeup on the right side of their face while doing little on their left side
  • Miss words, letters, and numbers on the left side of a page

 

Picture of black man sitting in a wheelchair being comforted by a white individual from behind.

Tips for Providing Care for Individuals with Spatial Neglect

Identify possible safety issues in your home environment. They may bump into objects or furniture or knock off hot beverages from their tray on their neglected side.

Try not to tell them to “look left." Their concept of “left” is different now. Incorporate alternative ways to remind them to pay attention to their neglected side. Encourage visitors to sit on their left when talking to them. Arrange the environment to provide stimulation, such as placing the television, a family photo, or a vase of flowers on their affected side. However, place things that cannot be missed (e.g., reading glasses, call buttons, emergency information) in their non-neglected side of space. 

Reduce environmental distractions, such as background noise and extra people, before attempting to help them with important tasks.

Recognize that symptoms may become worse when they are fatigued. Encourage key activities when they are most alert.

Offer assistance with important tasks they were initially responsible for since difficulty reading left-sided material (neglect dyslexia) may lead to embarrassing errors in financial, academic, or other detail-oriented work.

Picture of white female stressfully holding both sides of her face, reflected in a mirror.

Spatial Neglect Increases Stress Among Family Caregivers

Family members concerned for people with disabilities or chronic illnesses often take on the roles of “caregivers” despite lacking professional training or compensation. These family caregivers can be spouses, relatives, cohabitating partners, or friends who often provide constant assistance, support, and supervision.

Research conducted by Center scientists has revealed that family caregivers of stroke survivors with spatial neglect experience higher levels of stress and burden compared to caregivers of stroke survivors without spatial neglect.

Family caregivers play a crucial role in stroke rehabilitation. They assist both stroke survivors and themselves in managing recovery expectations and alleviating negative emotions associated with adjusting to the "new normal" in their shared lives.

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Top photo: Older man and woman sitting on living room couch. He is handing water glass help her take pills.  Bottom photo: Older male caregiver standing next to and embracing older woman in wheelchair in their living room.

Balancing Self-Care and Caregiving

While assisting your loved one in their spatial neglect recovery and rehabilitation journey, it's crucial to remember to take care of yourself as well. Providing care can be emotionally draining, leading to exhaustion, frustration, and worry. It's common to lose sleep due to nerves, sadness, and grief, and caregivers may even experience depression.

Don't feel ashamed or guilty about taking personal time. Remember, you can be a more effective caregiver when you're also taking good care of yourself.

Prioritize self-care alongside caring for your loved one during their stroke recovery and rehabilitation journey. Seeking help and support when needed is essential.

Many caregivers strive to stay strong and hide their own struggles to avoid saddening the survivor further. However, it's essential to acknowledge your own feelings.

If you find yourself facing "caregiver burnout," characterized by feeling overwhelmed, consider the following steps from the American Stroke Association:

  1. Acknowledge your feelings
  2. Recognize and commend yourself for your caring dedication
  3. When you feel clear-headed, assess your situation for possible improvements. This might involve seeking outside help for respite, participating in social events to maintain a life beyond caregiving, and joining support groups that offer advice on common caregiver challenges
  4. Seek resources that offer coping strategies to help you regroup. Explore support groups and rehabilitation programs focused on spatial neglect to aid your loved one's recovery

 

Resources for Family Caregivers

American Stroke Association: For Family Caregivers

Family Caregiver Alliance

The Caregiver Space

VA Caregiver Support Program

American Stroke Foundation