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How to navigate the current social care system if you are affected by dementia

Seeking support from the social care system can be daunting, particularly for people affected by dementia who face many other daily challenges. We have guidance to help you navigate this complex process, including where to go for further help and information.

Challenges of the social care system

Navigating through social care can be intimidating. The current system is complex and uses lots of jargon. People affected by dementia have many other things to deal with.

Resources are often tight or insufficient, and you have to be persistent to get results. Not everyone is confident at doing this, especially when vulnerable or feeling overwhelmed already.

It can be a lottery as to how much information people are given by social care and health professionals at different stages.

Sometimes people have to seek out information themselves, but it can be hard to know where to go for information that is accessible and clear. It's also difficult to know who or what to trust.

Good dementia care is expensive and people worry how it will be paid for. Some people sell their home to help pay for their care, but it isn't always necessary.

How are social care and health care different?

Social care

Support provided through social services is usually means-tested. This is for both care at home and residential care (care homes).

There are differences in the amounts and thresholds depending on whether you're in England, Wales or Northern Ireland, and whether you're looking at care at home or residential care.

Health care

Care provided by the NHS, whether it's continuing healthcare (CHC) funding or funded nursing care isn’t means-tested. Instead, it's just based on needs.

Continuing healthcare (CHC) funding is a package of care arranged and fully funded by the NHS, or Health and Social Care (HSC) Trusts in Northern Ireland.

There are complex assessment processes in England and Wales for CHC funding. A person is eligible if they have ‘a primary health need’. This means they would have complex, unpredictable, or intense needs that are over and above what social services would meet. In Northern Ireland, CHC is currently undergoing reform and the processes aren’t clear at the moment.

Funded nursing care is a contribution paid to a nursing home to cover the additional costs of nursing care as opposed to residential care.

Getting started with social care support

Assessment for care and support

First, an assessment is required by the local authority. This varies depending on whether you're in England, Wales or Northern Ireland.

Self-funding care

You don’t have to involve the local authority if you are self-funding but it can be helpful to have a needs assessment. A person may need local authority support if their capital reduces in time.

Advocacy support

If you have difficulty in taking part in the needs assessment, social care processes and planning your support, and there isn’t anyone (such as a family member or close friend) to help you, then an advocacy service may be able to help you navigate the processes.

In England, social services should arrange an advocate in the absence of family or friends if you will have difficulty taking part in the assessment and ongoing reviews. 

Money matters and dementia care

The financial assessment to pay for care is different, whether you are in England, Wales and Northern Ireland.

Only the income and assets of the person who is living with dementia is taken into account.

Make sure you find out which benefits you are entitled to as a person with dementia or a carer.

It’s wise to get financial advice if you are self-funding to consider the options, such as a deferred payment agreement if your house will be taken into account. The Money Advice Service has lots of helpful information, including funding long-term care and how to access an independent financial adviser.

If a person loses the mental capacity to manage their money (and if they haven’t appointed an attorney through a Lasting power of attorney, or a deputyship isn’t put in place to manage the person’s finances) things could get tricky. Keep these in mind.

Where to go for further help and information

Alzheimer's Society is here to provide information, support and advice.

Age UK has a range of useful factsheets on paying for care.

Age Cymru has factsheets on paying for care in Wales.

Turn2us is useful for benefits information and has a good grants search tool.

Citizens Advice may have local caseworkers if you need more support with navigating the processes.

Disability Law Service can offer free legal advice on community care-related issues.

Solicitors for the Elderly may be able to help connect you with the right legal help when you need it.

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