Help and support for people with dementia
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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.
Following a diagnosis of dementia, you should have a care plan. This should set out what sort of care you, and people who care for you, might need. It's not the same as a needs assessment.
Your care plan should include:
- how you can keep doing the things that are important to you for as long as possible
- information about services that can help you and how to access them
- any health conditions you have that need regular monitoring
- the name of a health or social care person who will coordinate the different kinds of support you may need
Your care plan should be reviewed at least once a year.
Local services can help you develop a care plan. These services could include a memory assessment service, your local council and a GP. It can be different local services in different parts of the country.
If you find you need help to manage everyday tasks like washing, dressing or cooking, it's advisable to get a needs assessment from the social services department of your local council.
Ideally, this assessment should take place face to face. It's a good idea to have a relative or friend with you if you're not confident explaining your situation. They can also take notes for you.
If the needs assessment identifies you need help such as a carer to help with personal care (washing and dressing), meals delivered to your home (meals on wheels), or a personal alarm, you will then have a financial assessment (means test) to see how much you'll contribute to the cost of your care.
If you're caring for someone with dementia, you may also be eligible for Carer's Allowance and support from your local council. Before you receive any help from your local council, you should ask for a carer's assessment.
If a person with dementia has care needs that relate mainly to their health, they may qualify for free NHS continuing care, which will be assessed by NHS staff.
Living in your own home
Many people with mild-to-moderate dementia are able to stay in their own home and live well if they have adequate support. Being in familiar surroundings can help people cope better with their condition.
Moving into a care home
As the symptoms of dementia will get worse over time, many people eventually require support in a care home. Depending on their needs, this could be a residential care home or a nursing home that offers services for people with dementia.
If you've been caring for a partner or relative with dementia, this can be a difficult decision to take. Talk through your concerns with friends and family.
Remember that you will still be involved in the care and support of the person with dementia after they move to a care home. You may be able to arrange a trial period in a care home for the person you care for.
Your local council will have to carry out another needs assessment to confirm the need to go into a care home and a financial assessment to decide how much the person will have to pay towards their care home fees.
Residential and nursing homes are inspected by the Care Quality Commission (CQC). You can read their reports of care homes in England.
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 the free Admiral Nurse Dementia Helpline on 0800 888 6678 or email firstname.lastname@example.org.
The helpline is for carers, people with dementia, and health and social care professionals.
There are several dementia charities that offer advice and support.
One of the main dementia charities is Alzheimer's Society. Its website has information on all conditions that cause dementia, not just Alzheimer's disease.
It also has information and advice about living with dementia and finding help and support near you.
Alzheimer's Society runs the Dementia Connect support line on 0333 150 3456, which provides information and advice about dementia.
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.
Alzheimer's Research UK carries out dementia research but also answers questions about dementia and dementia research, including how you and your family and friends can get involved. The charity's helpline is 0300 111 5 111 and can provide help and guidance.
Age UK has advice on a range of topics, including advance care planning, benefits and choosing a care home, as well as information on local activities and services for those with dementia. It runs a free national helpline on 0800 055 6112.
The Carers Trust provides information and advice on its website for carers, including how to get support for yourself.
Carers UK is a national charity for carers, providing information and advice from benefits to practical support.
Online forums are a good way to share your experiences of living with dementia or caring for someone with dementia, as well as reading what others are going through.
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.
Reading Well Books on Prescription for dementia offers support for people diagnosed with dementia, their relatives and carers, or for people who would just like to find out more about the condition.
GPs and other health professionals can recommend titles from a list of 37 books on dementia. The books are available for anyone to borrow free from their local library.
Read more about the Reading Well Books on Prescription for dementia.
Sign up to the NHS website Dementia Information Service, which can help guide you through the often difficult time after a dementia diagnosis.
You'll receive a weekly email for 6 weeks, each one covering a different need-to-know topic.
Find out more about the Dementia Information Service.
Page last reviewed: 08/06/2021
Next review due: 08/06/2024