Setting up a home activity programme takes time, but it can be very worthwhile and highly enjoyable too. The programme will need to be tailored to fit the specific needs of the person with a brain injury: every individual is different, so the type and pace of activities included in the programme will need to reflect this.
This information is adapted from our booklet Redeveloping skills after brain injury, which provides more information and guidance on the effects of brain injury and ideas for activities to build into your programme. If your relative is still working with a rehabilitation team then you should consult with the therapists and ensure that you are all working towards the same goals.
1 Draw up a list of possible activities that are within the person’s capabilities
Think of the activities that the person enjoys, what motivates them, what may irritate them, what they can understand and what they can do safely. Try to make the most of everyday activities and incorporate these into the home programme. If possible, include responsibility for one or more household tasks, however straightforward, e.g. laying the table, or watering the plants.
Many of the things that we do each day can be useful opportunities for relearning: for example, following a recipe provides practice in concentration, using one’s hands, remembering, organising, safety awareness, and following instructions.
2 Get information about your local facilities
Look around your local area for support. There may be suitable support groups and services that could be used for one or more days a week.
- Is there a local leisure centre that runs sports sessions for people with disabilities?
- Does your local Headway group or branch have any useful ideas or contacts?
- Could you share or join in some of the activities with another family who are in a similar situation to your own?
- Are there local volunteer agencies or groups who could help?
- Have you been in touch with a rehabilitation team, either at the hospital or in the community, to discuss ongoing therapy for your relative? Speak to your GP or specialist if you are unsure.
Sharing the running of the programme with other people also allows you more time to yourself and prevents you from becoming overtired.
3 Get advice from others
Talk to the staff who have been involved in the rehabilitation process so far. Observe them while they are working with your family member. Ask questions, look at the materials that are being used, and determine how they facilitate the activity to help bring about the best performance.
Don’t be afraid to ask them if you are stuck for ideas, encounter major difficulties, or have any doubts. Notice the activities that your relative finds more difficult, how they respond to frustrating tasks, and how long it takes before they become tired.
Bear all of these things in mind when drawing up your own activity programme.
4 Plan a clear routine
Sticking to a strict schedule of regular activity may sound challenging, but it is vital in helping someone towards increased levels of independence. Make sure that the schedule is realistic, that there are not too many activities packed into one day, and that there is a daily balance of physical and mental tasks.
Write all of the activities and their planned time slots on an easy-to-read weekly timetable. This helps to prevent confusion, and means that everyone knows what is expected and when.
5 Be aware of difficulties with motivation
If the person seems lacking in motivation, encourage them to make choices, rather than doing things for them. This can be at a very basic level, such as choosing what to drink or what to wear that day, or it may extend to making choices about controlling their own life (and you may not necessarily agree with their choice).
If the motivation problem is severe, limit their choices to simple things and only offer two alternatives, e.g: ‘tea or coffee?’, ‘jumper or cardigan?’
Later you may be able to offer a wider choice, e.g. ‘what colour should we have the kitchen painted?’
Do make sure that you only offer choices if you can fulfil them. In other words, don’t offer coffee if there is only tea in the pot!
A system of rewards may assist in developing motivation levels, but care needs to be taken regarding what forms these are in, how immediately they are able to be delivered, and whether the individual finds them meaningful.
Your relative may still be interested in the same things as before the injury, so see whether these will rekindle enthusiasm. If not, try to find something new that might interest them.
6 Be aware of fatigue levels
Remember that rest is important too, and that fatigue is a very common difficulty after brain injury. Build some time for relaxation into your programme if you haven’t done so already. Using music, TV, brief naps, etc, can help to provide a balanced variety of activity, and allows the person a chance to ‘recharge their batteries’. (For more ideas, refer to Headway's booklet ‘Managing Fatigue’.)
7 Start slowly...
When you first begin the programme, start with fewer activities spread out throughout the week, rather than attempting to carry out the full programme straight away. This will help everyone to get used to the idea of having scheduled activities. If the programme is too exhausting or frustrating from the outset, everyone will quickly lose their motivation.
Remember that it takes time to get used to a home-based routine again after being in a hospital-type setting, so start slowly and add more activities as you feel able to do so.
8 Review progress and celebrate achievements
Try to record progress, as often it is slow and seems hardly noticeable unless you find some way of measuring it. It is very motivating to know that developments are taking place, even if these are small.
Measuring the time taken to perform a task, or the number of correct answers given, means that progress can be recognised and rewarded. You may wish to show the results on a chart, and/or perhaps use a simple system of ‘rewards’ to provide encouragement to carry out activities. These may be small, frequent rewards, or larger rewards once a week (such as a trip out to somewhere special).
Use praise and encouragement as much as possible. Even if an activity does not seem to have gone well, there will usually be some positive point to praise, e.g. getting up on time to carry out the activity, or putting a great deal of effort into attempting it.
Further information
Once you have designed your activity programme, it does not need to be ‘set in stone’. Activities can be altered on an on-going basis according to changing interests. There may also be new opportunities to take part in activities that haven’t been tried before. Don’t worry if the activity programme doesn’t go exactly as planned: you can use any of the ideas for activities as often as it suits, and come back to the programme whenever you feel ready.
You mind find it useful to use Headway's range of publications to help understand more about the effects of a brain injury, and get guidance on how to help. You can download our range of e-booklets and factsheets in the information library.
To find out more, download our booklet Redeveloping skills after brain injury below. You can also contact our helpline on 0808 800 2244 or helpline@headway.org.uk to discuss any of the issues covered here.
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