Advice

How to navigate the social care system if you're affected by dementia

Many people affected by dementia will need support at some point. If you’re new to social care, it can be difficult to know what to expect. Those with experience of the system often feel more comfortable asking for help. 

Here are five tips to give you the information to prepare and know what to ask for.

1. Understand the difference between health and social care

Health and social care should work together seamlessly. Sadly, that isn’t always the case. It’s helpful to know who is responsible for what, so you know who to contact when you need support. 

Your GP is the central point of contact for any healthcare needs. They should manage day-to-day health concerns, such as infections, and carry out reviews after a diagnosis.

They can also refer you to other health professionals when needed, such as community mental health teams following a change in symptoms or occupational therapists to support independence. 

Social care is managed by your local authority. It’s sometimes known as adult care or social services. Contact your local council to learn more about social care in your area.

Social care provides support with day-to-day activities, such as maintaining your home, getting out and about, and managing tasks such as preparing meals and getting dressed. It is also there to support carers who may need a break, or help to continue, in their caring role.

2. Think about what will help you

There are lots of types of care and support, but what works well for one person may not suit someone else. What is available locally can also vary, as can what is affordable for each individual. 

It might be helpful to chat with family and friends about what’s available in your area and what might suit you best. You could:

• Explore our dementia directory: It details where and how to access services, such as social groups, information and support groups, and advocacy services.
• Visit local groups: Speaking to other people affected by dementia can provide information and ideas as well as support. Others may share what they’ve tried and how it worked for them, giving useful insight.
• Look at care providers near you: You can search on the CQC website or in a local directory. Some regional directories are available to order in print, such as Care Choices.
• Ask your local authority: they have a duty to provide information in a format that suits you.

If you're thinking of getting help from care homes, it can help to visit respite options and see what local care homes offer. This may never be needed, but it can be useful to plan ahead just in case. 

For example, if a carer needs an operation or some time away, preparing means you already know which placements are close by, which you prefer, and any you’d rather avoid.

Learn more about respite care

Respite care means taking a break from caring, while the person you care for is looked after by someone else. Learn about respite care in England, Wales and Northern Ireland.

• Respite care in England
• Respite care in Wales
• Respite care in Northern Ireland

3. Ask for a social care assessment 

The local authority must assess anyone with an ‘appearance of need’. Assessments act as a gatekeeper to receiving a care package or funding and delays are common, so don’t wait until it’s urgent. Early support can help you, or the person you care for, remain as independent and healthy as possible.

Local authorities must also assess carers to see if they would benefit from support. If carers are struggling with certain tasks, they should let the local authority know if they are no longer ‘willing or able’. This may then place the local authority under a duty to provide care.

• Learn about assessment for care and support in England
• Learn about assessment for care and support in Wales
• Learn about assessment for care and support in Northern Ireland

4. Be aware that social care is means-tested

You may have to pay towards the cost of care. This will depend on your financial situation, such as your income, savings and other assets. Financial assessments differ between England, Wales and Northern Ireland. 

The value of your home won’t normally be considered if you’re living there. Only the finances of the person living with dementia are assessed, not their family or partner.

If you already know you are going to have to fund all your own care, you can contact care services directly to arrange this. You may still benefit from a social care assessment, and you’re entitled to one regardless of your finances. You can also ask the local authority to help arrange homecare on your behalf, but they can charge an administrative fee.

If you’re assessed as having a ‘primary health need’, the NHS will arrange and fully fund your care. This is known as NHS Continuing Healthcare (CHC). If the local authority thinks you may be eligible, they should refer you to your integrated care board for assessment. 

Most people with dementia will not be found eligible for CHC as their needs are often primarily found to be social care needs, as opposed to primarily health needs.

If you don’t qualify for CHC, but you do need care in a nursing home, you will be eligible for a contribution towards your nursing costs instead. This is known as Funded Nursing Care and is paid directly to the nursing home. 

5. Be prepared to speak up and complain

Make a note of dates, staff names and correspondence from your first contact. This can prevent you losing track of where you are in the process. If at any stage you aren’t getting the information or care that you need, you may need to make a complaint. 

This can be frustrating at a time when you need help, but it’s sometimes necessary to keep you safe and well. Having your own records can support you with this. If you don’t have someone, such as a family member, who can help you navigate social care, ask for an advocate.

Learn more about how to complain to the Local Government and Social Care Ombudsman.