Getting Support
Living with dementia can be hard, whether you have a dementia diagnosis yourself, or care for someone who has dementia.
Many people find it helpful to have someone they can talk to who understands dementia and/or is able to help them access services and information that can help.
There are several sources of support available to people with dementia. Either through social care services or national organisations which have local branches, or organisations such as Guideposts Trust.
CPNs and Mental Health Team
Specialist support is provided for people with dementia through the Community Psychiatric Nurses (CPNs) and Mental Health Team. More information is available in our Services - Health section.
Support Workers
A number of organisations employ Support Workers, or Carer Support Workers. Support Workers can provide an understanding ear when you need someone to talk to, as well as helping you to access the information and services you may need.
Different support workers have different specialist areas, so do not be surprised if a support worker from one organisation offers to refer you to a support worker from another organisation.
Most support workers accept referrals from any source, (e.g. self or a care professional).
Guideposts Trust offers support to anyone caring for a person with dementia through the DISC Helpline (Dementia Information Service for Carers). Speak to someone who understands the complex issues for a family affected by dementia. The helpline is staffed during normal office hours 0845 1204048.
Alzheimer's Society Support Workers
Alzheimer's Society support workers specialise in supporting people who are living with dementia, and their family and friends.
Carers' Centres
A variety of support is available to carers of all ages through Carers' Centres (Princess Royal Trust for Carers). They provide information, support and advocacy including help with benefits, courses, days out, trips and groups. This includes:
- Support Workers
- Young Carers' Projects
- Support Groups
- Help with Form Filling
- Newsletters
- Training Courses
- Respite Funds
Support Groups
A number of support groups exist, that enable carers and family members of people with dementia to meet together. Groups may also have programmes which include speakers and/or social events. Visit Dementia web's local county sites page to see what support groups are in an area near you.
Advocacy
Advocacy is a way of helping people, in partnership, to express their views and wishes, so they can be heard.
Making sure that people listen to what you want to say can be difficult for many reasons. These include embarrassment: not wanting to hurt anyone's feelings: and, being unsure of your rights. This is no different for people with dementia.
What is different is that sometimes it is assumed that people with dementia cannot make choices or do not know what they want. But, if given time, clear information and the chance to say what they want, many people can express their wishes and play their part in making informed decisions. This is where an advocate can help.
Supporting Care Rights / Making a Complaint
If you need support to help you access care rights, or to make a complaint about hospital treatment, there are organisations which can help and support you. Details are in our Care Rights and Complaints section.
Supporting People from Ethnic Minorities
A number of groups and organisations exist to support people whose first language is not English, or who have distinct religious or cultural needs:
Alzheimer's Disease International has an extremely helpful web page, of contact details and web links for Alzheimer associations in around 75 different countries around the world. This information is likely to be useful for people living with dementia whose first language is not English, and also useful for people who live in the UK, but have friends or family members who have dementia and live abroad.
Although based in London the Afiya Trust is an organisation with a national perspective. Its aim is to reduce the inequities of health and social care for racialised groups. It campaigns, puts on events and produces publications for both carers and users of mental health services. It provides a networking function for everyone with interests in the black and ethnic minority communities.
