A dementia diagnosis can come as a shock to the person with the condition and those around them. However, there are sources of help and support for everyone involved. It's natural to worry about the future, but it's important to remember that you're not alone. The NHS, social services and voluntary organisations can provide advice and support.
Get a needs assessment
Following a diagnosis of dementia, one of the first steps to take is to get a health and social care assessment. This assessment is how a person with dementia, and the person or people looking after them, gets help and support from their local authority's social services department. The assessment is carried out by social services to find out what help and support you need – such as healthcare, equipment, care services in your home, or a stay in a care home.
If a person with dementia has ongoing medical care needs, they may qualify for free NHS continuing care, which will be assessed by NHS staff.
Read more about what to expect from the NHS and social services.
Care options for people with dementia
Many people with dementia stay in their own home if they have adequate support, either from family carers, community nurses or paid care workers. Being in familiar surroundings can help people cope better with their condition.
Read about caring for someone at home and find out about small adjustments to the home that can help people with dementia.
Many people with dementia will eventually need support in a residential care home. This could be a care home or a nursing home, depending on their needs. The Alzheimer's Society has reported that around two-thirds of people in care homes have some form of dementia. However, not all care homes are suitable for people with dementia.
If you care for someone with dementia and they have to go into a care home, try to make their room as familiar as possible. For example, put photos of family and friends where they will see them every day. Favourite pictures, furniture and ornaments could also make them feel more at home.
You may be able to arrange a trial period in a care home for the person you care for.
Some people with severe dementia may need palliative care in a hospice, where they can receive good nursing care and pain control.
Admiral Nurses are registered nurses and experts in dementia care. They give practical, clinical and emotional support to families living with dementia to improve their quality of life and help them cope.
Admiral Nurses work in the community, care homes, hospitals and hospices.
To talk to an Admiral Nurse, call Admiral Nursing Direct on 0800 888 6678. The helpline is open seven days a week from 9am to 5pm; also from 6pm to 9pm on Wednesday and Thursday.
The helpline is a free service for carers, people with dementia, and health and social care professionals.
Charities for people with dementia
There are several dementia charities that can offer excellent advice and support. The leading dementia charity is the Alzheimer's Society. Its website contains essential information on dementia and Alzheimer's disease, including how to live well with the disease and how to find help near you.
Dementia UK is a national charity that aims to improve the quality of life for people with dementia. It offers advice and support to families who are living with dementia through its Admiral Nurses, who are registered nurses and dementia experts.
Dementia UK and its Admiral Nurses also provide training for professionals who work with people with dementia.
If you are looking after someone with dementia, it's important that you know how to get help and support for yourself as well. The Carers Trust is a good place to start looking for information and advice on how to get help and support, and even a break from caring.
Alzheimer's Research UK carries out dementia research, but it also answers questions about dementia and dementia research – including how you and your loved ones can get involved. The charity's infoline 0300 111 5 111 (open Monday to Friday, 9am-5pm) can provide help and guidance.
Social media for people with dementia and their carers
Online forums are a great way to share your experiences of caring for someone with dementia, as well as reading what others are going through. If there's a particular issue you are struggling with, the chances are that someone else has had the same experience.
Talking Point is the Alzheimer's Society's forum. It has people with dementia sharing their information and advice, and supporting each other.
Carers can also turn to online communities on the Carers UK forum and the Carers Trust forum.
Dementia books on prescription
Reading Well Books on Prescription for dementia offers support for people diagnosed with dementia and their relatives and carers. GPs and other health professionals can recommend titles from a list of 25 books on dementia. The books are available for anyone to borrow for free from their local library.
This service is also available to people living without a formal diagnosis, who may be worrying about symptoms of dementia.
Read more about the Reading Well Books on Prescription for dementia titles.