2.3 Explain concepts of loss in relation to acquired brain injury for individuals and carers

This guide will help you answer 2.3 Explain concepts of loss in relation to acquired brain injury for individuals and carers.

Acquired brain injury (ABI) changes a person’s life in ways that can be hard to measure. The word “acquired” means the injury happens after birth, rather than from something in development. This can happen after a trauma, such as an accident, a stroke, a tumour, or an infection.

Loss is a word used to describe many changes someone might experience after ABI. Loss can affect the person who has the injury and everyone around them, including family, friends, and carers. Understanding loss is key in supporting people through this difficult time.

Concepts of Loss in ABI

Loss can be physical, mental, emotional, social, or financial. Each of these has a different impact.

Physical Loss

Physical loss covers changes to the body. Someone might lose the ability to move parts of their body. They might need to use a wheelchair, or become less independent with everyday tasks. They might have problems with speech, sight, or balance.

Physical loss often leads to a loss of independence. Before the injury, a person might have lived on their own, driven a car, or worked. These things may no longer be possible or may need adjustment. This can be very hard to accept for both the person and those close to them.

Cognitive Loss

Cognition is the brain’s way of working out information. It covers things like memory, attention, and making decisions. After an ABI, a person might find it hard to remember things, concentrate, or follow conversations.

Loss of cognitive skills changes how a person manages daily life. They might struggle to handle money, look after children, or keep up with social events. This can be very frustrating. Others may not see these problems, so people often feel misunderstood.

Emotional and Psychological Loss

Emotional loss means the grieving of who they were before the injury. People might feel angry, fearful, lost, or alone. The shock of ABI can lead to depression, low self-esteem, and anxiety.

People might feel they have lost their sense of self. They may no longer recognise who they are or what their place is in the world. They might feel “less than” what they were.

Social Loss

Social loss means losing contacts outside the immediate family. A person might stop seeing friends, stop working, or leave clubs and groups. Isolation and loneliness can follow.

People often feel left out or avoided. Relationships may change if others do not know how to act or what to say. This can lead to the person becoming withdrawn.

Financial Loss

Loss of income after ABI is common. A person might lose their job or find it hard to return to work. Costs for treatment, equipment, and extra support add pressure to families.

Financial strain can cause worry and disagreements. It can mean changes to how the family lives day-to-day.

Loss for the Individual with ABI

Loss after ABI is personal and wide-reaching. Changes may be sudden or gradual. Each person’s experience is unique.

Mental health can get worse if losses are not talked about. The person may “mourn” their old self, habits, or skills. This is called “psychological bereavement”. They may compare themselves to before and struggle with the difference.

Self-confidence often drops. A person may doubt their value. They may get frustrated when trying things they could once do easily. This can create a cycle of anger, sadness, or giving up.

Loss brings a sense of grief. There may be tears, guilt, or reluctance to ask for help. Someone safe and trained to listen can help at these times.

Loss Experienced by Carers and Family Members

Family and carers feel loss in different ways. They may lose the relationship they had with the person before the injury. This is a hidden loss and is often not spoken about much.

Types of loss experienced

• Loss of partnership: A partner may now feel more like a carer than a husband, wife, or friend.
• Loss of shared plans: Holidays, work, family goals, or hobbies may change or end.
• Loss of emotional support: If the person is unable to offer comfort, the carer loses a source of support.
• Financial loss: The main wage earner may not be able to work.

Caring can be rewarding, but it often means new responsibilities and less time for self-care. Family members may feel isolated, stressed, or resentful at times.

Ambiguous Loss

Ambiguous loss is when the person is still alive but changed. This loss can be confusing or hard to speak about. Friends or family may say, “She’s not the same person since the accident,” or “He’s there, but not as he was.”

Ambiguous loss does not have an end. There is no clear closure, so people may get stuck and find it hard to make sense of their feelings.

People might find it hard to grieve fully. They may feel guilty for missing the “old person” or for feeling angry or sad.

The Grieving Process

Grief after ABI is not just about someone dying; it covers many kinds of loss. The grieving process is different for everyone. It may involve:

• Shock and disbelief
• Sadness and crying
• Anger or blaming
• Guilt over what has happened
• Acceptance and finding a new normal

People may move back and forth between these feelings. Support and understanding are helpful throughout the process.

The Impact on Identity

“Identity” means how a person sees themselves. After ABI, everything about daily life may feel different. Not being able to work, support family, or do hobbies can make people question who they are.

This can be hard for carers too. They may lose the person they once relied on for love or support. Roles in the family may swap, such as a child caring for a parent.

Loss of identity can lead to:

• Low self-worth
• Social withdrawal
• Loss of hope for the future

Support from family, friends, or health workers makes a difference. Talking about the changes can help people adjust.

Social Roles and Relationships

Social roles are the parts people play in their families and communities. This can include parent, partner, employee, or friend. After ABI, these roles may change or stop.

Friends may drift away. Family members might have to change routines or take on new duties. Personal relationships may become tense if people find it hard to talk about feelings.

Loss of social roles leaves people feeling useless or a burden. Support groups can help by bringing together those with similar problems.

Emotional Reactions to Loss

People respond in different ways to loss after ABI. Some common responses are:

• Denial: “Nothing is wrong. I’ll get back to normal soon.”
• Anger: “Why did this happen to me?”
• Bargaining: “If I try harder, everything will be fixed.”
• Depression: “Nothing will ever get better.”
• Acceptance: “I am different now, but I am still me.”

Carers may go through the same stages. Talking with a counsellor or support group helps many people manage these feelings.

Ways to Support Loss

There is no single right way to cope with loss after ABI, but there are helpful steps.

For the individual:

• Encourage talking about feelings.
• Celebrate small achievements.
• Structure the day with routine and meaningful activity.
• Be patient with changes in mood or behaviour.
• Encourage joining peer support groups.

For carers and family:

• Seek support for yourself, not just the person with ABI.
• Share feelings with others in a similar situation.
• Set realistic expectations.
• Care for your own health and well-being.
• Ask professionals for information and advice.

Loss will likely always be present in some form, but people can find new meaning. Creating new family roles or activities can help everyone adjust.

Professional Support and Resources

Several professionals can support loss after ABI:

• Neuropsychologists: help with thinking skills and emotional issues.
• Occupational therapists: support daily living skills and routines.
• Speech and language therapists: assist with communication problems.
• Social workers: guide with benefits, housing, and linking to other support.
• Counsellors: provide space to talk about feelings.

Community groups and charities offer practical help, activities, and support groups for both individuals and carers. Information on rights, finances, and care at home can make things less confusing.

Redefining Recovery and Moving Forward

Recovery after ABI is not always about things going back to how they were. Sometimes, it is about finding new strengths, learning to adapt, and building a new life.

Setting small, clear goals helps. This could mean improving one daily skill, meeting a friend, or trying a hobby. Every person is different, so progress will look different for everyone.

Carers can help by being positive and encouraging. Professionals can offer tools, advice, and practical support. Over time, some losses may become easier to live with, even if they cannot be repaired.

Final Thoughts

Loss after acquired brain injury can shape every aspect of life for both individuals and their carers. The effects are wide and often lifelong, covering physical, emotional, social, and financial change. Both the person with the injury and those around them might grieve, feel frustrated, or mourn lost roles and routines.

But people also find strength and connection during this time. Support, patience, and simply having someone listen can make life easier. Learning to live with loss does not mean never feeling sadness. Instead, it means accepting change, recognising new possibilities, and celebrating progress, however small.

If you or someone you care for is facing an acquired brain injury, know that loss is part of the process. With the right support, guidance, and understanding, it is possible to build a new sense of self, purpose, and hope for the future. Remember, you do not have to cope alone—help is always available.