5.3 Plan ahead

Talk to your family about your future wishes

People with dementia and other conditions, carers and healthcare professionals share their views on why planning ahead can help you prepare for the future in this video.

Having the right documents in place means that your views, wishes and beliefs can be shared with others. This can help them to support you as your dementia progresses.

It can be uncomfortable and difficult to think about your future with dementia. You may need to think about the care and support you might want when you are no longer able to make your own decisions, and as dementia progresses towards end of life. This can also make it difficult to talk about what you might want with family, friends or professionals.

However, writing down your wishes for now and the future can help you make sure that the care and support you receive is what you want. By making decisions now, you can ensure your family, friends and the health professionals who care for you know your wishes and thus stop them second-guessing what you would have wanted. This can help you stay in control as you move forward with dementia. It can also take some difficult decision-making away from the people who support you.

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

It explains the different types of plans you can make and includes a helpful checklist and template to help you get started.

Read the planning ahead guide and use the template to start planning ahead

Staying involved in decisions about your health, care and welfare

There may come a point when you no longer feel, or are able to speak about, important decisions about your health and other important things such as your finances. Someone you trust such as a close family member or friend may need to make important decisions on your behalf. It is important they know what you would like. Making sure people are clear about what you would like and writing these down can make sure that your wishes are known and carried out.

Professionals (such as your GP, dementia navigator, social prescriber or other) who help you plan your care should ask your views and opinions about the care and support you want. To help you do this, they should give you information in a way you can easily understand it. They should also give you a document to write down what you plan. There are guidelines in England and Wales about involvement in decision making.

You may be worried that if you make plans now you might change your mind in the future. It is important that you are given the chance to think about any decisions you have made and any changes you want to make.

The law and making decisions

In the UK, there are laws to make sure you are included in important decisions about your health and wellbeing. This protects your rights. 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 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 your health, care and welfare

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

Care plans

You can plan the care you may need now or as your needs change. ‘This is me’ can help you to think about how you want to be cared for if you are no longer able to tell others. It is helpful for making sure health and social care professionals have the right information about you and your care. For example, it might be helpful if you are admitted to hospital or have respite care. You can fill this in anytime.

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

You can find more information about planning your care now in Plan services to get support.

Financial and legal plans

Putting Power of Attorney in place allows you to appoint a trusted person to make decisions on your behalf but only when you are no longer capable of doing so. This might be a family member or friend. Lasting Power of Attorney gives the person legal authority to make decisions on your behalf when you are no longer well enough to do so.

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 you do not have a relative or friend, an independent mental capacity advocate (IMCA) can be instructed to protect your 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:

Scotland

Northern Ireland

Advance care planning

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

Advance decisions to refuse treatment and advance statements

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

You can find out more about advance decisions and advance statements here. The NHS dementia guide also has links to resources to help you with advance decisions and statements.

You can use also use a template to start writing down any treatments you do not want to receive.

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

You may also want to make other plans such as wills, funeral planning and organ donation.

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

There are many organisations who can provide advice and support and point you in the right direction to help you plan for your 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 can use your personal toolkit to start building your own plan to support your health and wellbeing now, over the next year and beyond.

Take action

Talk to family and friends
Discuss what you want if you are no longer able to make decisions, and when you pass away

Write legal plans
Use the Alzheimer’s Society guide to planning ahead to help you get started