This section is aimed for those looking after people with FAD.
There are over 670,000 carers for people with dementia in the UK and the amount of free care they give saves the state around £8 billion. Often carers experience difficulty in getting a diagnosis for the person with dementia, because the symptoms aren’t well-recognised, and then find they are “left alone” after diagnosis when in fact they really need on-going support and information. And whilst there may sometimes be an element of relief to finally be given a name for what’s going on, it can also be very upsetting and make the future seem uncertain. When the diagnosis is a genetic condition such as familial Alzheimer’s disease, the carer also has to cope with all the implications this has for the rest of the family.
Various social dilemmas arise when you care for someone with dementia – friends and neighbours often can’t see that anything is wrong, don’t understand what help you might need, or in the later stages just assume that there’s no point visiting. It is important not to assume that everyone will react like this though, as this can put you off asking for any sort of help; do try to ask friends and neighbours for what you need and see what the result is. The emotional impact of dementia is also hard – many people go through a wealth of feelings from guilty, angry, and annoyed, to sad and despairing. Coming to a peer support group is one way of realising that it is normal to feel like this, and that many other carers also have those feelings from time to time. Sometimes you can manage these feelings by finding some time to yourself, or letting off steam with a friend, or going out for a walk or to do another activity you enjoy. However, if they become overwhelming and stop you from getting on with what you want to do, there are lots of options that have been shown to be helpful. Your GP should be able to refer you for a form of counselling, of which there are different types to suit different people. If you are feeling particularly and persistently low in mood or anxious, your GP should also be able to discuss with you whether you may benefit from some medication.
More and more research is focusing on carers and their needs. Key messages are that carers need on-going support after diagnosis, and that healthcare professionals must recognise that the needs of the carer and the person with dementia change all the time. National guidelines for carers from the National Institute for Health and Clinical Excellence (NICE) now say that all carers should have an assessment of their needs (which includes assessing for and treating psychological distress if necessary), and should be given education about dementia, peer-support groups and information about benefits and legal matters. Ideally a lot of this initial information should be provided by an NHS clinic, although feedback from carers shows that services really vary in how much they understand about dementia and what information they can offer.
Peer support groups such as the FAD support group can be a useful means of support for carers, providing a forum where it is possible to share their experiences and coping strategies with each other.
Follow the links below for further information on support and advice: