Information for Carers and family

Encephalitis can not only have an impact on the person affected but also their family and friends. Our guides and factsheets offer information for family members, carers, teachers, family doctors and work colleagues as well as opportunities to connect with others whose lives have been affected by encephalitis.

Our award-winning support team are also available to answer any questions you may have. Contact the support team

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Carer and family virtual gathering

We are holding monthly virtual meetings for carers and family members where you can chat and share experience, get advice and make friends. Read more

Carer's stories

Coping with the consequences of encephalitis can be highly stressful for the whole family. You may find you are taking a new and responsible role- the carer, but it is likely you may also need support and looking after yourself. Read more

The challenge of caring

If you are caring for someone affected by encephalitis, it is important to acknowledge that this is likely to have a significant effect on you, and you too will need support. Read more

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In-person support groups

We run in-person support groups across the UK and in Ireland. Hosted by our Support Volunteers in the local area, this is an opportunity to meet like-minded people in an informal and relaxed setting.
International Research Seed Funding

Researchers in low to middle income countries are being invited to apply for seed funding from the Encephalitis Society. Deadline 9 September 2022!
Twitter Art Exhibit: An Interview with Susannah Cahalan

Susannah Cahalan, author of Brain on Fire, chats to Mathew Bose about the Twitter Art Exhibit and how the drawing of a clock helped a doctor diagnose her with autoimmune encephalitis

NMDAR antibody encephalitis

NMDAR antibody encephalitis is an autoimmune disease that causes psychiatric features, confusion, memory loss and seizures followed by a movement disorder, loss of consciousness and changes in blood pressure, heart rate and temperature.
Herpes Simplex virus encephalitis

Herpes simplex encephalitis is a type of infectious encephalitis which happens when herpes simplex virus (HSV) enters the brain. Usually, it begins with ‘flu-like’ symptoms followed by neurological deterioration, which may include personality and behavioural changes, seizures, weakness and difficulties in communication.
What is encephalitis?

Encephalitis is an inflammation of the brain caused by an infection or through the immune system attacking the brain in error.
Guidelines for recovery

No two people with encephalitis have the same outcomes. People recover at different paces. Recovery can be helped by having lots of rest, good nutrition, helpful social network and support from professionals.
Limbic encephalitis

The term ‘limbic encephalitis’ (LE) describes the condition when limbic areas of the brain are inflamed (swollen) and consequently not functioning properly. Most forms of LE fall into two main categories: infectious encephalitis and autoimmune encephalitis.
West Nile encephalitis

West Nile encephalitis is a type of infectious encephalitis caused by West Nile virus. People usually become infected after being bitten by a mosquito, which has fed on an infected bird.
Death from encephalitis

Encephalitis is a serious neurological condition and unfortunately, despite improvements in specific and more supportive treatments such as excellent intensive care management, encephalitis still has a high mortality (death) rate.
Encephalitis:after-effects, recovery and rehabilitation

This booklet provides key information about the type of issues that people may have after encephalitis, why rehabilitation/support from professionals and families are important and what options for self-help are available.
Emotional and behavioural changes

Following encephalitis, some people may experience emotional and behavioural changes including low mood, increased anxiety, depression, mood swings, frustration, aggression, impulsivity, disinhibition, and/or poor emotional regulation.
Get support

Our Support Service is here to help you with any questions about encephalitis, recovery and rehabilitation or emotional support.