Social life

After a brain injury, many people struggle to maintain a social life and social relationships. Socialization is incredibly important for a person’s overall health and well-being. A lack of socialization leads to feelings like loneliness and low self-esteem. Negative effects on mental health from lack of socialization can lead to more problems such as paying less attention to physical health and rehabilitation.

Socializing after a brain injury can be challenging, but it is not impossible. There are ways for people with brain injury to interact with others that can create a rich and fulfilling social life while still being mindful of changing abilities and needs.

Topics in this section include:


Socializing challenges

Communication challenges
Communication challenges for people with brain injury come in many forms.

Aphasia

Aphasia is a cognitive language disorder and occurs when the language center of the brain is affected. When a person has aphasia, they may experience difficulties with speech, understanding conversation, reading and writing. This can make socializing very difficult.

Some ways to navigate social situations when a person has aphasia includes[1]:

  • Asking people to repeat themselves or speak slowly if the person didn’t understand them
  • Conversing in quiet environments
  • Pointing
  • Speaking slowly
  • Using hand gestures
  • Writing or drawing instead of asking the person to speak

You will have to be patient when talking to someone with aphasia as you may not be able to converse with them the same way you did before their injury. You can help them fill in the blanks or find words but be careful not to do all of the speaking for them.

Dysarthria/dysphagia

Dysarthria is when a person has difficulty speaking due to nerve damage or impairment of the muscles that control speech. This could be due to muscle weakness, paralysis or lack of muscle coordination.

Effects of dysarthria include[2]:

  • Difficulty with clear annunciation
  • Difficulty with slow or fast speech
  • Slurred speech
  • Soft volume – inability to speak louder volumes

Some ways for people with brain injury to cope with dysarthria in social situations include:

  • Being patient with themselves and taking their time
  • Repeating themselves if necessary
  • Using hand gestures
  • Working with a speech language pathologist
  • Writing down words or use an alphabet board

Aprosodia

A less common communication challenge is called aprosodia. This means that a person is not able to reflect emotion or feeling in their tone of voice or is not able to understand it in others. This can make speaking with others difficult because lots of emotions are conveyed through tone of voice.

Some ways for people to cope with aprosodia include:

  • Asking others to avoid sarcasm or explain jokes to avoid confusion
  • Explaining feelings in words to others
  • Working with a speech therapist on inflection exercises
Confabulation
Some individuals with an acquired brain injury process information in a way that makes it hard for them to distinguish between what’s real and what’s not. Details are twisted or made up, leading to stories that are untrue – but the person doesn’t realize they are including false details. Confabulation is often called ‘honest lying’ because the person believes the lie.

This can lead to difficulty socializing, particularly if other people don’t know that the person with a brain injury isn’t aware they’re sharing false details. It can frustrate people, which can lead to conflict. You may have noticed this, especially if you are with the person as

You can help a person with confabulation by:

  • Confirming story details politely. It’s important not to make the person feel silly for not sharing the right information
  • Explain the condition to others before social interactions
  • Have the person keep a daily journal – this will give both of you an accurate record of events and they can refer to it at later times
Disinhibition
In some cases, a person with frontal lobe brain damage may have ‘no filter’. This means they say or do whatever they are thinking without considering factors like environment, audience or consequences of their words or actions. This can lead to oversharing of information, inappropriate conversation and insensitivity towards others. This is called disinhibition.

The best way to avoid inappropriate sharing is for the person to have a step-by-step checklist for what to do when conversing with someone. This can include: to practice deep breathing and use reminders to check in with yourself. You can also:

  • Asking for second opinions on topics or decisions they have made
  • Practicing conversations before social engagements
  • Using deep breathing exercises to help with focus
  • Using hand signals with caregivers to identify when the person may need to take a pause

As a caregiver, you may find that you get embarrassed or anxious about being in social situations with your friend or family member because of their disinhibition. While this is often a reflexive reaction, it’s important for you to be patient and understanding: for the most part it is out of their control and they will need your help to navigate social interactions and re-learn what is appropriate and what is not.

Environmental factors
Socialization can often happen in environments that can be overwhelming or irritating for someone with a brain injury. Some social settings can:

  • Be inaccessible
  • Require interaction with staff/strangers on a frequent basis
  • Require too much physical exertion
  • Be restrictive
  • Are too loud, too bright or too crowded

If the person experiencing environmental barriers, they are less likely to engage in social interactions. Some ways for them to cope with social activities and environments include:

  • Asking in advance if the space has accommodations for accessibility. Businesses are becoming more aware of the need for standards of accessibility for all, not just physical disabilities
  • Limiting the number of people for each interaction
  • Looking for sensory-friendly spaces
  • Starting with shorter social engagements
  • Taking breaks

As their caregiver, you can help them navigate these social environments and be a support system, especially if they are nervous

Fatigue
Fatigue can be both physical and cognitive. If the person with a brain injury experiences fatigue often, they may be tempted to reject social invitations. While not every social situation will be the right fit for them, fatigue does not have to prevent them from socializing. By understanding fatigue, how it affects them, and using management strategies to reduce its impact, they will be able to engage in social events.

Feeling like a burden
After a brain injury, many individuals struggle with feeling like a burden to their loved ones.

Let them know you do not think of them that way. They may be reluctant to talk to you about their feelings or not know how to bring it up. Establish a routine time where you both share your feelings and thoughts with each other, even if it is just a few minutes a day. Being able to open up to you will make your friend/family member feel more secure, and in turn you will be able to help them address concerns they have over social occasions.

Lack of awareness
Lack of awareness can refer to multiple areas of socialization, including[3]:

  • Appropriate conversation
  • Interrupting
  • Misunderstanding jokes
  • Not being able to acknowledge social difficulties
  • Personal space

Ways for people with a brain injury to cope with lack of awareness include:

  • Asking for clarification if there’s something they don’t understand
  • Having a set of signals that can be used at events to mean different things such as take a breath, needing a break, or more
  • Rehearsing social interactions
  • Taking breaks from conversation
Reading facial and verbal cues
In social situations, people use verbal and facial cues to convey how they feel and what they mean. A person with a brain injury may be unable to read or may misinterpret facial and verbal cues. This is called social-emotional agnosia[4] . Social-emotional agnosia can result in awkward or inappropriate responses or actions during social interactions.

Ways to help a person with a brain injury navigate facial and verbal cues include:

  • Having people state exactly what they mean in conversations
  • Interpret for them. For example, they may not realize raised eyebrows mean surprise, so you can inform them that the other person is surprised by what was just said or done
  • Rehearse facial cues before the person goes out. This can be done with cue cards as well
Unable to start or follow conversation
Often brain injury survivors have difficulty following a conversation, especially if a person is talking too fast, the environment is too loud, or there are multiple people speaking[5]. If they struggle with conversation, there are some steps you can take to help them:

  • Ask for people to speak slowly, clearly and one at a time
  • Ask to have social engagements in quiet, uncrowded environments
  • Create cue cards with conversation topics
  • Rehearse conversations

Dangers of social isolation

Humans are social by nature, and a lack of socialization can lead to loneliness, low self-esteem, reduced emotional functionality, mental health struggles and depression. Studies have shown that social isolation can even lead to more health problems. Many brain injury survivors may have fewer social experiences, leading to increased social isolation. This can be caused by:

  • A feeling that people don’t understand brain injury
  • A lack of accessibility
  • Anxiety and depression
  • Others having difficulty adjusting to the changes
  • Physical barriers
  • Social difficulties

All of these can make it even more difficult to reach out to others – or have others reach out to them. It’s a vicious cycle that can be difficult to break. But there are ways you can help your friend/family member with a brain injury combat social isolation.

  • Keep in touch with your local brain injury association – they run webinars, peer mentoring, events, and other activities that promote socialization
  • Encourage the person to leave the house when they can – even fresh air and seeing people in their neighbourhood can help
  • Set up regular calls with family, friends, and loved ones
  • Encourage them to talk to mental health professionals if they are struggling
  • Use technology to stay close with others

Depression

Depression is a common emotion experienced after a brain injury[6]. Adjusting to their new self and their experiences is difficult and can result in elevated stress and feelings of depression.

Symptoms of depression include:

  • Changes in eating patterns
  • Changes in sleep
  • Changes in weight
  • Feelings of sadness
  • Focus on the emotions of loss and grief
  • Helplessness, worthlessness and guilt
  • Irritability
  • Less interest or pleasure in objects or activities previously enjoyed
  • Loss of sexual interest
  • Physical aches and pains
  • Poor concentration
  • Tiredness or loss of energy
  • Thoughts of death and suicide
  • Withdrawing from friends and family

You may also be struggling with all the changes in your loved one and how it has affected  your own life if you have become their primary caregiver. It’s important to understand how depression can impact both of you and how to work together to prioritize and care for your mental health.

The importance of socializing as a caregiver

You will also need to set aside time to socialize with friends and family outside of your role as a caregiver. Caregiving – particularly full-time caregiving – limits your free time, and it’s easy for your social life to fall by the wayside. Socializing is important for everyone, and if you aren’t getting breaks from caregiving and time to interact with others, you may find that your mental health is negatively affected.

Make socializing a priority in your self-care plan. Keep in touch with friends via text or phone calls, and make sure to ask for help from other family members or hire personal support workers to cover respite so you have time for yourself.


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