Find information and contact details of organisations that provide care, support and/or information for people with dementia, their carers and loved ones.
How is dementia different to normal age-related memory loss?
Most of us forget things every day, like people’s names or where we put our keys, but this is not necessarily a sign of dementia. In dementia, memory loss is more serious than forgetting things every now and then. It is memory loss that starts to interfere with everyday life, for example getting lost when going to the local shop.
There are many reasons why people can experience memory problems. Some medicines and drugs can affect memory. Depression, anxiety, stress, vitamin deficiency, infections and thyroid problems can also make people forgetful. If you are worried about your memory and it’s getting worse, or getting in the way of everyday life, then you should talk to your GP as soon as possible.
What happens after someone is diagnosed with dementia?
In the early stages of dementia different diseases can cause a range of different symptoms. For example, Alzheimer’s disease usually causes problems with short-term memory, and frontotemporal dementia can cause issues with behaviour, speech and language.
All of the diseases that cause dementia get worse over time, affecting more and more of the brain.
Dementia affects each person differently. There is no set amount of time that someone will be able to function independently after a diagnosis. However, there will come a point when someone with dementia won’t be able to carry out day-to-day tasks by themselves anymore. Tasks like washing, eating, and taking medicines can become a lot harder as time goes on.
Eventually someone with dementia may forget the names and faces of their loved ones. This can be very hard for their families and friends. Because every person’s experience of dementia is different, there is no way of knowing exactly when this will happen. However, it’s important to remember that this is nobody’s fault. It is also not a reflection of the person’s true feelings towards their loved ones.
Many people with dementia need to move into a care home when symptoms become harder to manage, or it is unsafe for the person to live at home. Again, there is no set timeframe for when this will happen, as it depends on many factors. Having a care assessment is important following a diagnosis. This can help to create a plan that’s right for you.
Organisations that offer dementia-specific support
Sources of support for people with specific forms of dementia
Organisations that provide emotional and mental health support
Caring for someone with dementia
A carer is anybody who provides care for someone who needs help because of an illness or disability. They might be a partner, relative, friend or neighbour, known as informal carers or paid professionals known as formal carers.
Many carers feel they are doing what anyone else would in the same situation by being there for their relative or friend.
The care they give is usually unpaid, although they may be eligible for certain benefits.
Anyone of any age can become an informal carer, and there is not always a clear-cut point when someone becomes another person’s carer.
Formal carers such as care workers, support workers and personal assistants are different from unpaid carers. They are people who are paid for a specific service. This might be for domestic tasks like cleaning or shopping, or help with personal care, such as washing, dressing, or managing medication.
Helpful contacts for carers
The organisations in this section offer help and advice on finding and paying for care, legal and financial information about care and support for carers, including replacement care (respite care).
Organisations for older people
There are a number of websites providing help and advice for young carers. These include:
- Young carers hub (NHS Choices)
- Young carers (Barnardos)
- Include programme (Children’s Society)
- Action for Children (Call: 0300 123 2112)
Planning ahead after a dementia diagnosis
If you or someone you love is diagnosed with dementia, it’s important to talk about the future. People with dementia will eventually lose the ability to make decisions by themselves, so having these conversations early on can allow their wishes to be carried out.
You may also wish to put in place a Lasting Power of Attorney (LPA). There are two types: financial, and health and welfare. This document allows a designated person to make decisions on someone else’s behalf, if they cannot make it themselves. If an LPA is not submitted, the person’s wishes may not be carried out if they are deemed unfit to make decisions.
For more information on legal and financial plans, request our free “Planning for the future” pack.
Support with accommodation, housing and care homes for people with dementia
Help finding care providers
There are a large number of care providers. Some agencies will offer care through the local council, as well as privately.
A good place to start looking for services is the Care Quality Commission. They are the regulator for health and social care services in England. There are equivalent regulators in the other countries of the UK.
They publish reports on care homes and care services in the home (domiciliary care) that highlight the quality of care provided. You can search for local care services on their websites.
Legal and financial information and advice for people affected by dementia
Some solicitors provide free information on their websites about mental capacity and Lasting Power of Attorney.
For example, Wright Hassall has produced a ‘Legal guide to dealing with dementia‘ that you may find useful.
There are also some helpful resources about making a will, inheritance tax, planning and paying for care and Lasting Power of Attorney here.
Other useful contacts
Support for people affected by dementia
This booklet is for people affected by dementia, including family, friends and carers. It lists organisations offering help, advice, information and support.
Dementia: Your questions answered
This booklet is for people affected by dementia, including family, friends and carers. Its lists organisations offering help, advice, information and support.
This information was written in February 2024 and is due for review in July 2026. It was written by Alzheimer's Research UK's Information Services team with input from lay and expert reviewers. Please contact us if you would like a version with references.
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Dementia Research Infoline
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