5.1 Support shared decision making and planning ahead

Planning post diagnostic support

Planning care and support to meet current and future needs is a cornerstone of good post diagnostic dementia support. This helps people with dementia and their carers to get the support they need at the right time. Involving people living with dementia in decisions about their care is a key best practice recommendation for clinical management, so making sure people are supported to make their own decisions while they are able is critical.

Some people with dementia and carers have told us they prefer to live their life day to day. Others have other told us how important it is to have the chance to have input into their care and support and put plans in place for the future. As a practitioner, part of your role will be to help the person to make their own decisions when possible, and encourage them and their carers to proactively plan ahead for changing needs.

We bring together current guidance, resources, research, and the experiences of others to support engaging people with dementia and their carers in decision making and planning ahead. This will help the person and their relative or carer understand how to make plans and decisions about their health, wellbeing, care and support to move forward positively with dementia.

To help you quickly access key information, Forward with dementia provides a brief summary of the issues relating to post diagnostic support from diagnosis and a direct link to the resource. You can also signpost the person with dementia and their carer to the area of the website tailored for them.

Making Plans and Decisions – People living with Dementia

Making Plans and Decisions – Carers

Help the person and carer to understand shared decision making as they move forward with dementia

Dementia affects decision making

Whilst people with dementia and their carers may understand that dementia is likely to affect their memory, they may not be aware that their ability to make decisions is also likely to be affected. This ability can fluctuate on a daily basis or be caused by a short illness. It is paramount that people are sensitively made aware that over time, they may need others to make decisions on their behalf. Dementia UK have a helpful booklet explaining mental capacity and decision-making with dementia.

Section 2 of Alzheimer’s Scotland leaflet on making decisions outlines how changes in the brain affects decision-making.*

*Note that the legal context in Scotland is different for England, Wales and Northern Ireland. See article Practical support and shared decision making for more information about the the law and mental capacity in the UK.

Making plans for care and support now and as needs change

Making plans can help the person to stay in control over day to day decisions in their life, and also helps with the bigger decisions such as the care and treatments they may receive, and where they might live. This is important for wellbeing and decision-making.

NICE guidelines recommend involving people with dementia and their carers in decision-making by:

Encouraging and enabling the person to share their views and opinions about care

Using additional or modified ways of communicating information to inform decision-making. For example:

Using simple language or visual aids, non-verbal communication, or someone else such as a family member or speech and language therapist to support. See Section 3.10 of the Mental Capacity Act code of Practice for more information

Using a structured plan or tool to find out key information about the person such as:

Their likes and dislikes

Routines

Personal history.There may come a point when the person no longer feels able to make or communicate important decisions about their health and wellbeing and someone else may need to make these on their behalf. As a professional, you may rely on the person’s appointee* to make such decisions on their behalf. See The Mental Capacity Act 2005 Code of Practice. The British Medical Association provides a useful overview and toolkit of prompts to support practitioners in understanding and applying the principles of the Act .

Action:

Make sure the person has had the opportunity to make their wishes known and written down to ensure that their wishes and preferences can be respected and help the decision-making process.

Access additional resources on the Mental Capacity Act 2005.

In this video from Newcastle University, a GP and Old Age Psychiatrist explain dementia and mental capacity. Carers also talk about decision making on behalf of the person they support.

Start the conversation about Advance Care Planning

Planning ahead is often called Advance Care Planning (ACP). This gives the person the chance to think about how they would like to be supported and cared for when they may no longer be able to tell people what they want and can make their own decisions.

NICE guidelines recommend that people with dementia and their carers should be offered early and ongoing opportunities to talk about:

The benefits of planning ahead

Lasting power of attorney (for health and welfare decisions and property and financial affairs decisions)

Creating an advance statement about their wishes, preferences, beliefs and values regarding their future care

Advance decisions to refuse treatment

Preferences for place of care and place of death.

Reassure the person that they can change any decisions they have made through regular review. See sections 1.1.12 and sections 1.1.13 of the guideline.

Practitioners share several practical suggestions for you to sensitively introduce care planning and ACP to people with dementia and their carers:

Link care planning to something real can help people to see the value. For example, asking the carer who would support the person if they were away on holiday, or were unwell.

Make planning relevant to the person right now. For example, asking the person to think about what they do now, such as the people who are important to them now and how they support them. This can build to conversation about changing needs and support.

Use a newspaper article, a television programme or something similar may get the conversation started. For instance, there may be a storyline about dementia in a popular soap opera, or an article in a magazine that you can share. This can help them to open up about what the person in the story might do.

Explain that it is part of your role to talk about all parts of their dementia care and support, including planning for now and the future. For example, referring to NICE clinical guidelines as best practice.

Introduce the topic and suggest making another appointment to talk about planning for the future next time. This gives the person with dementia and their carer to think about what they might want and need in the future. Documents such as ‘This is me’ can help the person to think about what is important to their care. The plan can be filled in by the person and brought along next time.

The Alzheimer’s Society provides a helpful guide to planning ahead for people with dementia and their carers.