5.2 Practical support for shared decision making and planning ahead

Providing practical support with planning ahead

There are practical ways you can help people with dementia and their carers make plans to move forward with dementia. Plans need to be flexible and responsive as needs and circumstances change, however, whilst some plans will be informal others will be legally binding. An understanding of the legal context in your area of the UK and organisations who can offer guidance can support you to help the person and their carer to take part in shared decision-making to make the plans they need for support now and as they move forward.

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 practically support the person with dementia and their relative or carer to make and document relevant plans and decisions about their health, wellbeing, care and support to move forward positively with dementia. See Support shared decision making and planning ahead for suggestions on broaching shared decision making and ACP.

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 – person with dementia Making plans and decisions – carer.

Making plans with the person and their carer

Once the person with dementia and their carers are engaged in discussions about planning ahead, the next step is to support the person to document their needs, wishes and beliefs in accordance with recommendations, guidance and legislation.

Care planning

Care planning should be personalised and enable the person to access the right support now and as their needs change. Plans should be made with the person and the outcome should be a clear, simple document which the person can also access. Opportunities to review and update the plan should be included.

Everyone in England and Wales with a diagnosis of dementia should be supported by a named health or social care professional (which may be you) to make a care plan. See NICE guideline Section 1.3 Care Coordination.

This enables people living with dementia to document current needs and wishes for their health and care. This should be reviewed regularly. The NHS England Good Care Planning Guide provides information on care planning for primary care providers and commissioners.

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

You can encourage the person with dementia and their carer to visit their sections of the Forward website to use the toolkit to create and review their personalised action plan. This can help people focus on the things that are important to them now and over the next year and beyond. . There they can collect resources and take actions to support their health and wellbeing. If they choose, they can send you their personal link to share their plan with you. You can also use the toolkit area to save and store any articles you may have found useful in this guide.

Action:

Support the person with dementia and their carer to create their own care plan

Encourage the carer to plan for their own needs too and create a separate plan

Link the person and their carer to the toolkit section of the website.

The legal context of mental capacity and shared decision making

In the UK, there are laws to ensure that people with dementia are included in important decisions about their health and wellbeing. UK countries have different laws and legal systems around mental capacity and guardianship. The Codes of Practice give guidance for decisions made under each act.

England and Wales – Mental Capacity Act 2005. See the Code of Practice.

Scotland – Adults with Incapacity (Scotland) Act 2000. Note there are different codes of practice.

Northern Ireland – The Mental Capacity Act (NI) 2016. Code of Practice documents.

The general principles of all of these acts are to make sure that people with impairment of the brain or mind are not presumed to lack capacity and that incapacity is not an ‘all or nothing decision’ and if found to lack capacity people can remain involved in important decisions about their health, wellbeing and other life decisions.

This legislation helps to protect the rights of people with dementia.

Your role in care planning and assessing mental capacity to make decisions or providing legal documentation

In your role you may or may not be required to assess mental capacity, but it is likely you will need to explain the different types of plans people can make regarding their health, welfare and financial requirements. Some of these plans will be legal documents. The main types of plans people with dementia and their carers may make to protect and support their health and welfare are outlined below:

Financial and legal plans

Power of Attorney enables the person living with dementia to appoint a trusted person to make decisions on their behalf – this may be a relative or friend. Lasting Power of Attorney gives the person legal authority to make decisions on behalf of the person with dementia.

Power of Attorney covers a range of decisions. There are two types: Lasting Power of Attorney for Health and Welfare and Lasting Power of Attorney for property and financial affairs. If the person does not have a relative or friend, an independent mental capacity advocate (IMCA) must be instructed to protect their rights. The GOV.UK site sets out how to make, register or end a Lasting Power of Attorney.

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

is a means to supporting good care as dementia progresses towards the advanced stages. Evidence suggests that planning for this care as soon as possible is beneficial. There are a range of plans which can be used to help start advance care planning. Dementia UK provide advice and a plan – My Advance care plan.

Giving the person with dementia and their carer regular opportunities to think about and change plans is important – particularly if there are a change of circumstances in the person’s life.

Advance decisions to refuse treatment and advance statements

Can help the person to 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 (if it complies with the Mental Capacity Act, Is valid, and applies to the situation), however advance statements are not, but must be taken into account.

The NHS website provides more information on advance statements and advance decisions to refuse treatments (ADRT).

Discussions may include discussions about resuscitation (DNACPR).

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

Training and educational resources around mental capacity and shared decision making

Online and local courses are available if you would like additional training and education on mental capacity and dementia. Below are some examples:

Social Care Institute for Excellence

NHS England

Welsh Assembly

Policy Hub Scotland

Department of Health (Northern Ireland)

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

There are many organisations who can provide advice and support and point the person in the right direction to help the person and their carer to 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

Don’t forget – direct the person with dementia and their carer to the toolkit section of the Forward website to start to build their own plan to support their health and wellbeing now, over the next year and beyond.