1.3 Describe long-term adjustments families may need to make

This guide will help you answer 1.3 Describe long-term adjustments families may need to make.

Supporting a family member with a brain injury brings sudden and lasting changes. At first, families focus on urgent medical care and daily living. Over time, they discover a need for long-term changes. These adjustments affect daily routines, relationships, finances, and health. Some may be temporary, but many become a normal part of life. How much changes depends on the type and severity of injury.

Understanding and planning for these long-term adjustments helps everyone cope better and leads to safer, more stable lives.

Changes to Living Arrangements

After a brain injury, the home environment might no longer meet the person’s needs. Families may need to:

• Move to a different home that is easier to access
• Modify the current home: ramps, grab rails, stair lifts, or bathroom changes
• Redesign rooms for wheelchair use or special equipment
• Remove hazards to reduce the risk of falls or accidents
• Set aside a quiet space if the person is troubled by noise or busy areas

Sometimes, families need regular visits from carers, nurses, or therapists. In some cases, the only suitable setting is a supported living facility or a care home.

Changes to Family Roles and Responsibilities

Family life shifts when one member needs significant care. Long-term adjustments include:

• A partner or spouse becomes a primary carer, often taking over tasks the injured person once did
• Children or young people might take on new responsibilities, such as household chores
• Other relatives, like grandparents or siblings, may move closer or visit more often to help
• Family members take charge of medical appointments, medication, and care plans
• Some split up care tasks so responsibilities are shared more evenly
• Personal time, hobbies, or social lives may be reduced

Over time, “caring” becomes part of daily life for the whole family.

Financial Adjustments

Brain injury can lower or end someone’s ability to earn money. Long-term financial adjustments often include:

• Claiming welfare benefits or local council support
• Managing extra costs: equipment, therapies, transport, and home changes
• One or more adults may have to reduce hours at work, or leave work completely, to care for their family member
• Searching for grants, charitable help, or government support for carers and disabled people
• Setting budgets and planning for unforeseen expenses (such as medical emergencies)
• Dealing with complex paperwork and assessments for funding
• Considering legal power of attorney to manage the injured person’s finances if they cannot do this themselves

Families often need advice from social workers, specialist charities, or financial advisers.

Adjusting Routines and Daily Activities

Brain injury often causes fatigue, memory problems, slower thinking, or mobility issues. Long-term changes to routines may include:

• Allowing much more time to get up, eat, get dressed, and travel
• Planning rest breaks and quiet periods each day
• Simplifying tasks or breaking them into smaller steps
• Using diaries, reminder alarms, lists, or communication boards
• Rearranging family meals, social events, or holidays to allow for the injured person’s needs
• Overseeing therapy exercises and rehabilitation tasks as part of the daily timetable
• Using specialist equipment—hoists, communication devices, adapted cutlery

Daily life becomes more planned and less spontaneous.

Communication and Relationship Changes

Brain injury can change how someone talks, acts, or understands others. The family need to adjust:

• Learning new ways to communicate, such as gestures, pictures, or electronic devices
• Being patient with repeat questions, memory lapses or mood swings
• Dealing with stronger emotions—anger, frustration, or withdrawal
• Supporting partners or children who struggle to adjust to the person’s new behaviour or abilities
• Attending relationship or family counselling if needed

Some relationships may deepen, but others may come under strain. Long-term goodwill and patience are needed.

Impact on Child and Young Carers

Children in the family may take on caring duties. The family must:

• Watch for signs of stress, tiredness, or falling school grades in young people
• Make sure children and teenagers get time for play, study, friends, and outside interests
• Seek support for young carers, such as school counsellors or local groups
• Explain brain injury in age-appropriate ways

Families often need outside support to balance care and children’s wellbeing.

Social and Community Adjustments

Life outside the home changes, too:

• Reduced trips out, holidays, or large family gatherings
• Arranging disabled access or transport for trips or visits
• Family and friends may react differently; some drift away, while new support networks develop
• Being open to help from neighbours, charities, or local carers’ organisations
• Changes to religious or community group involvement if the injured person cannot attend as before

Some families grow closer to others in similar situations, finding support and advice in peer groups.

Long-Term Caregiving: Health and Wellbeing

Caring for years can impact physical and mental health.

• Carers may need regular medical check-ups
• Managing stress, depression or anxiety requires support—this may include respite care or counselling
• Building in time off, relaxation or “me time” helps maintain wellbeing
• Looking for courses or support groups for carers can provide practical and emotional tools

Families need to look after their own health so they can care for their loved one properly.

Education and Work Adjustments

Work and education often need to change:

• Some adults retrain or seek flexible working arrangements
• Young people may need extra time or help at school or college
• Schools and employers can offer support for carer responsibilities, such as flexible hours or leave

Clear communication with schools or workplaces makes things easier over time.

Planning for the Future

Long-term planning is part of life after brain injury.

• Families may plan for long-term care options, either at home, with family, or in supported settings
• Making wills, advanced care plans, or assigning power of attorney gives reassurance
• Training younger family members or friends in care routines helps share responsibility
• Discussing wishes with the injured person about future care, if possible, is important

Preparation helps reduce worry about what will happen later in life.

Staying Connected and Finding Support

Families benefit from staying connected:

• Joining local support or peer groups offers advice, friendship, and a listening ear
• Contact with health and social care professionals brings regular help and advice
• Seeking help at early signs of carer fatigue prevents bigger problems

Support makes long-term care less lonely and more manageable.

Final Thoughts

The effects of brain injury last far beyond hospital discharge. Families must reshape daily life in dozens of ways, from managing routines and relationships to planning for the future. These changes can feel overwhelming, but with time they become the new normal.

It is important for families to seek out help and not struggle on alone. Support, advice, and small breaks offer real relief. Adjustments are ongoing and needs will shift, but families can find stability, meaning, and even new strengths in their changed lives. By recognising challenges and seeking solutions, you can protect your own wellbeing and give your loved one the best possible support.