Isolation: the invisible disability after brain injury

Isolation is a subtle but serious symptom of a brain injury. Stemming deeper than loneliness, people with a brain injury might experience isolation for many reasons – and each one prevents them from living with purpose and independence.

Following a brain injury, someone might experience isolation for many reasons. New mobility or clinical needs, relationship changes, trauma, and poor mental health can all affect how someone interacts with the world around them.

Each day, our dedicated teams are reframing the landscape of life after brain injury. Challenging the key obstacles that can create isolation, they’re supporting people to successfully overcome them. Addressing how physical, social, emotional, and behavioural needs impact their independence, we’re empowering them with the tools and confidence to overcome isolation, and achieve positive outcomes in the community.

Clinical confidence in the community

After someone suffers a brain injury, their life can look extremely different. Their bodies may change, which means they might need to make some big lifestyle changes too. These can be isolating for some people in many ways. Extended stays in clinical environments, which can limit social interaction and take away familiar routines, can create feelings of isolation. At home or in care settings, new mobility or needs can impact how someone performs everyday living tasks or maintains the level of activity they had before their injury. Clinical needs, like sensory conditions, visual or hearing changes, feeding needs, and complex medication regimes may also impact how someone continues to live independently.

Both physical and clinical needs can deeply impact someone’s ability to join in with everyday tasks or their favourite activities. As well as navigating mobility differences, their confidence and self-esteem might be affected. They may feel ashamed or embarrassed about their needs, which can stop them venturing outside the home. Often creating anxiety and poor mental health, this can further embed feelings of isolation.

Throughout our services, our specialist support teams are guided by our Clinical Nurse Managers to understand the clinical and physical needs that can follow a brain injury. Empowering our teams with responsive skills and knowledge, they help us safely and effectively support people in community settings to live with greater independence. Promoting dignity and choice, we ensure individuals are supported in a way that meets their unique needs and preferences. And if it’s right for them, our teams empower them to learn self-management techniques. Building self-esteem and autonomy, supporting their own needs helps regain a sense of control. Through this, they can rebuild confidence to join in with everyday activities, maintain social engagement and achieve the inclusion they deserve!

Safely and effectively managing clinical and physical needs in community settings, like our care homes, can be transformative. People can re‑engage with daily life, enjoy meaningful activities, rebuild relationships, so they combat isolation and rediscover life as an active member of society.

Olive, Clinical Nurse Manager

Rediscovering self

Brain injuries are complex and can sometimes influence personality and behavioural changes. As well as physical damage to the brain, lifestyle changes can influence new behaviours. When someone can’t live the life they did before, they may struggle to understand the reasons why. This can be difficult to process, creating poor mental health and emotional distress. Often, people use behaviours to express these feelings. They may have lots of new needs, be struggling with trauma or mental health, or may lack insight into their condition.

Behaviours can create obstacles, particularly in social situations and individuals may withdraw from the world around them to avoid conflicts. Misunderstood or unsupported behavioural needs can be very isolating. As well as stopping someone engaging with others, they may also disengage from their rehabilitation and not achieve the fulfilling life they deserve.

Within our services, we support people to understand their personality and behaviour changes and navigate the world around them. Delivering clinically guided support in the community, we equip the people we support with the tools to learn about and manage their behaviours. So, they can develop meaningful coping strategies that help them reintegrate with their local communities and build their social confidence. Delivered in specialist, structured environments, they can gently work through stuck emotions, rediscover who they are, and build more positive relationships with themselves and others!

We use structured, gradual approaches to ensure the people we support can safely and confidently access the community. They’re reinforced with a sense of purpose, never judged or overwhelmed and – most importantly – encouraged and supported.

Sarah, Deputy Manager, Markham House

Family and friendship

Relationships are an important part of everyday life for all of us. After brain injury, they can be incredibly challenging for both the survivor and their loved ones. Personality changes, mental health difficulties and complex care needs can change people’s roles and dynamics within relationships. With these changes difficult to accept, relationships can breakdown, creating losses that can be isolating for someone with a brain injury.

Our person-centred approach deeply embeds family values. Taking a holistic view of someone’s life, we consider how personal relationships impact someone’s everyday life and independence. Understanding how they benefit both physical and emotional wellbeing, we sensitively promote them as an important branch of our support. Relationships provide social touch points, promoting feelings of acceptance and belonging as someone rebuilds their life. Friendly and familiar, they also encourage a sense of inspiration and aspiration to achieving goals. They motivate someone to make meaningful, lasting progress.

When loved ones are absent, our empathic teams provide compassionate support that nurtures a strong sense of family and companionship. Coping with changes to relationships can influence feelings of loss and grief for people with a brain injury. Our teams are experienced in supporting people to understand these changes and look for opportunities to make new connections and foster new relationships. We also remain conscious of how family and friends visiting others may affect individuals who are processing relationship losses. Witnessing others’ relationships can deepen feelings of isolation and disconnection. Always considering each person’s wider emotional needs, our teams thoughtfully ensure these situations are avoided, so everybody feels included and cared about.

Listening and being kind can be the best way to help someone who feels isolated. Even as they progress, some days are going to be harder than others, especially if there’s absent relationships and other people have family visiting. It’s just taking that time to listen and be kind – and put yourself in their shoes.

Rosie, Therapy Lead, Knot House

Breaking down barriers

Underneath some of these common causes of isolation lies one continuous theme: environment. Social environments play a big part in creating feelings of isolation in people with brain injuries. External environments aren’t always designed to support additional physical needs. And internal environments can prevent them moving forward with their lives. Together, they create feelings of isolation. Through the power of education and awareness, compassion, and kindness, our teams are helping to break down the barriers that create isolation.

Alongside the incredible care and support they deliver in our homes each day, they are working with local communities to raise awareness of this invisible disability and how it impacts people who are navigating a scary – and often unprecedented – time in their lives. By raising awareness and sharing their expertise, they’re creating opportunities for the people we support to safely and confidently reintegrate with their communities and re-establish the meaningful lives they deserve.

It’s important we support people to embed themselves within their communities. We connect them with local support networks, helping them remain engaged with others. We establish links with local businesses, who make changes so their services are thoughtfully considered and accessible to the needs of people with a brain injury.

Peter, Operations Manager