5.3 Plan ahead

Talk to the person you support about their future wishes

Thinking ahead and making plans can be challenging at any time. Thinking about the future with dementia may be even more challenging. There may come a time when the person you support is no longer able to make their own decisions or be able to tell you about the care they want. This can make talking about the future with the person you support difficult. Read suggestions for talking about dementia.

People with a range of health conditions including dementia, carers and healthcare professionals all share their views on why planning ahead can help you and the person you support to prepare for the future.

Start your own dementia toolkit

Clicking here will open the toolkit information page where you can learn how to create your own dementia toolkit.

Having the right documents in place means that the views, wishes and beliefs of the person you support can be shared with others. This will help you and others to provide the best care and support as their dementia progresses.

Encouraging the person to write down their wishes for now and the future can help make sure they get the care and support they want. By making decisions now, this can ensure that family, friends and the health professionals know the person’s wishes and stop you second-guessing what they would have wanted. This can help the person with dementia stay in control as dementia progresses.

If they find this difficult, try to get the person you support to name one person professionals can speak to if they are unable to do so. This should be someone they trust and can rely on to give their point of view. This might be you, or someone else they trust.

The Alzheimer’s Society provides a helpful guide to planning ahead.

It explains the different types of plans the person you support can make and includes a helpful checklist and template to help them get started. This might be something you can help the person you support to work through.

Making sure the person you support stays involved in decisions about their health, care and welfare

There may come a point when the person you support no longer feels, or is able to speak about, important decisions about their health and other important things such as finances. Someone they trust – perhaps you, a close family member or friend may need to make important decisions on their behalf. Even if you have known the person you support well for many years, this can be a daunting thing to do. It can also become difficult if different people have different views. Knowing what the person would want and having this written down makes it clear you are acting on their behalf respecting their wishes.

Professionals (such as the person’s GP, dementia navigator or social prescriber) who help them to plan their care should ask the person’s views and opinions about the care and support they want. Professionals should give the person you support information in a way they can easily understand it. They should also provide a document to write down what is planned. There are guidelines in England and Wales about involvement in decision making. Read the recommendation here.

The person you support might worry about plans they make now and changing their mind in the future. It is important that the person is given the chance to think about any decisions they make and any changes they may want to make.

The law and making decisions

In the UK, there are laws to make sure people with dementia are included in important decisions about their health and wellbeing. This protects their rights. As a carer you will only be able to make legal decisions on their behalf if you have the right documentation in place. UK countries have different laws and legal systems around mental capacity and guardianship.

England and Wales – Mental Capacity Act 2005. You can find out more about the Mental Capacity Act and dementia.

Scotland – Adults with Incapacity (Scotland) Act 2000. Find out more at Alzheimer Scotland.

Northern Ireland – The Mental Capacity Act (NI) 2016. Find out more through the Department of Health.

Different types of plans for health, care and welfare

Some plans the person you support makes for their future will be legally binding and others are not. The NHS dementia guide provides an overview of legal plans.

Care plans

The person you support can start to plan the care they may need now and as their needs change. ‘This is me’ can help the person to think about how they want to be cared for. This can be filled in anytime, and this may be something you can help the person to do:

NHS England also provides planning advice for people with a diagnosis of dementia. This encourages people to develop an action plan.

You can find more information about planning care now in Plan for Now.

Financial and legal plans

Putting Power of Attorney in place allows the person you support to appoint a trusted person to make decisions on their behalf but only when they are no longer able to do so. This might be you, a family member or friend. Lasting Power of Attorney gives the person legal authority to make decisions on their behalf.

There are two types of Power of Attorney: Lasting Power of Attorney for Health and Welfare and Lasting Power of Attorney for property and financial affairs. If the person you support does not have a close relative or friend they want to act on their behalf; of if you are not able to do so, an independent mental capacity advocate (IMCA) can be instructed to protect their rights. The GOV.UK site sets out how to make, register or end a Lasting Power of Attorney.

You can get legal help from a solicitor to complete Power of Attorney, but there is a charge for each type.

Lasting Power of Attorney applies to England and Wales only. Scotland and Northern Ireland have separate legal systems and legislation

Power of Attorney in Scotland

Enduring Power of Attorney in Northern Ireland.

Advance care planning

Advance care planning can help the person you support get the care and support they want and need as dementia progresses towards the advanced stages. It is best to start thinking about this as soon as they feel able. Dementia UK provide advice and a plan to help get started:

My Advance care plan

Advance decisions to refuse treatment and advance statements

Both are ways of helping the person make decisions about medical treatments they do not want to have, and other decisions such as where to be cared for. Advanced decisions to refuse treatment are legally binding, however advance statements are not.

Find out more about advance decisions and advance statements at the Alzheimer’s Society.

The NHS dementia guide also has links to resources to help with advance decisions and statements.

The person you support can use also use a template to start writing down any treatments they do not want to receive: Advance decision template.

This might include decisions such as whether they would like to be resuscitated.

The person you support may also want to make other plans such as wills, funeral planning and organ donation.

Other organisations who can help with Planning ahead and shared decision-making

There are many organisations who can provide advice and support on planning ahead. They can point you and the person you support in the right direction to help plan for their future health and care needs such as:

Alzheimer’s Society (England, Wales and Northern Ireland)

Dementia UK

Alzheimer’s Scotland

Citizens Advice

Age UK.

You and the person you support can use your personal toolkit to start building your own plan to support your health and wellbeing now, over the next year and beyond.