Statement 2: People with dementia, with the involvement of their carers, have choice and control in decisions affecting their care and support

Key messages

What does this mean for care providers ?

Care providers in all settings need to give careful thought about how they enable people living with dementia to retain choice and control in decisions about their care and support. It must start with a good understanding of the person and their life history – who they are, what they have done, their likes and dislikes, needs and strengths, and what is important to them. Everyone needs to recognise that even needing care and support may result in a feeling that choice and control is being lost, and that a sense of losing control can affect mood and behaviour.

Care providers can help the person living with dementia by sharing information about how the service works, and taking time to fully understand what the person wants and needs from the service. It can be valuable to consider every aspect of the service and think about how you might feel were you to receive it, and identify ways that genuine choice and control might be offered.

People living with dementia must have the opportunity to take all the decisions they are able to - from choosing when to get up, what to wear, when to eat and how to fill the day, right up to making decisions about their healthcare, plans for the future and how they wish their end of life to be supported. Care providers need to understand that carers and family members may have different views and wishes, and acknowledge the importance of these while ensuring the person with dementia is heard.

Everyone providing care and support must understand the principles of the Mental Capacity Act and how this can help people living with dementia to make the decisions they can. It is also vital to consider what support may be needed – to think about the best time, person and way to talk about the decision, and identify any help needed with communication. Some people will benefit from support from an advocate to fully exercise choice and control.

Why is this important to carers ?

Going through the process of getting a diagnosis of dementia opens the door to future care and support: it can help people to take control of their lives and to plan ahead, for the short term (what to do today) and the longer term (how to organise finances and care). If people with dementia and carers are well informed – through being linked with good information and support networks – they are more likely to be able to have control about decisions relating to their care needs.

How can I help my relative who has dementia to have choice and control in decisions affecting their care and support?

People with dementia should be supported to have as much control as possible over every aspect of their lives. There are things that can help you with this – good information and advice, developing and maintaining links with local support and care networks, and using assistive technology (equipment and devices that help people manage their daily lives - the Alzheimer’s Society has further information) – so finding out as much as possible about what is available locally will be a good start. There are lots of practical things that you can do too: for example, making sure that a person can express their views (arranging for an advocate or interpreter if necessary) or that they can hear what is being said in a meeting (for example, that their hearing aid is working).

It is important that you talk about the implications of the diagnosis for the present and the future. Some practical issues will have an impact on everyone in the family, particularly if you or the person with dementia (or both of you) are adults of working age. You will need to think about employment and finances, driving licences, holidays and carers’ leave entitlements. More complex decisions will involve being clear about the person’s preferences for health treatments, finances and future care provision. 

There is likely to come a time when the person cannot make decisions for themselves. As a carer, you will want to be sure that the decisions that you make on behalf of the person are in their best interests.  Some decisions, such as deciding who will have Lasting Power of Attorney, must follow legal procedures in order to be valid. The SCIE Dementia Gateway website has a helpful section on ‘Making decisions’ that addresses these issues. You can also find full details about Lasting Power of Attorney at gov.uk

The person I care for has been offered a personal budget. What is this?

Personal budgets are part of a broader approach to giving people greater choice and control over their care needs – known as self-directed care. A personal budget is an allocation of funding given to a person who has had a local authority community care assessment and has been assessed as being eligible for local authority funding for meeting those needs. The payment must be sufficient to enable the person to purchase services to meet their eligible needs, and must be spent on services that meet those eligible needs.

The person can either take their personal budget as a ‘direct payment’, a payment that can be used to buy services directly from the provider, or they can leave the council with the responsibility to commission the services while the person still decides how their care needs are met and by whom.

Age UK has published Personal budgets in social care, and the Alzheimer’s Society has a factsheet on ‘Direct payments’: read these to find out more. 

Personal health budgets are a similar arrangement – but here the funding comes from the NHS instead of the local authority. NHS England has the latest information on personal health budgets. 

The Think Local Act Personal partnership promotes personalisation in care services - an approach to care that focuses on the needs of the individual. The website has some good examples of how Personal budgets and direct payments can be used to fund care that is tailored to meet the specific needs of individuals with dementia. 

How does the Mental Capacity Act apply to people with dementia and what are the implications for carers?

The Mental Capacity Act 2005 applies to everyone involved in the care, treatment and support of people aged 16 and over living in England and Wales who are unable to make all or some decisions for themselves. The Act is designed to protect and restore power to vulnerable people who lack mental capacity. 

It covers all decisions people may make for themselves, however big or small, from deciding whether to have a bath or shower to selling a house. The law says that people must be assumed to have capacity unless it is proved otherwise. This includes people with dementia. 

Even if, in the later stages of dementia, it is decided that the person lacks capacity to make a certain decision (for example, on financial matters), the person may still be able to decide what they want to eat or to wear and to express a view about what they enjoy doing. 

The Act also supports those who have capacity: it is a framework for people with dementia and their carers who choose to plan for their future and want to be reassured that they are doing so in a way that will be recognised legally. Look at the SCIE Mental Capacity Act resources hub to learn more about this important legislation. 

The person I am caring for has particular needs because of their cultural background. How can I support the person to ensure that their care and support is appropriate for their cultural needs?

Carers can play an important role in helping a person with dementia to spell out their needs across a wide range of issues – including those that may be shaped by the person’s culture: food, dress, religion and more. This may involve carers advocating for an interpreter to be present or for access to a culturally specific service. Carers may have important knowledge about how best link care services with particular community networks so that a person’s needs are better met – for example, arranging for a local community centre to deliver culturally suitable meals to a person’s home.

Key resources

Practical tips and information

The ‘Making decisions’ section on SCIE’s Dementia Gateway may be helpful here and includes information on making Best Interests decisions and advance care planning.

The Alzheimer’s Society also offer useful information on decision making and advanced planning as well as ‘This is me’, a tool for people with dementia to complete to let others know about their needs, preferences, likes and dislikes.

SCIE’s Mental Capacity Act resource will be helpful to anyone who needs to understand more about the principles of the MCA.

Communication tools can enable people to continue to express their views even when speech is more difficult. One example is Talking Mats (tel. 01786 479511)

SCTV
  • Emily’s Safety is about balancing risks and freedoms for Emily, a 94-year old care home resident. She wants to continue making tea for herself each morning, despite the risks of falls or scalds, and the staff team are anxious to ensure that arrangements are made which keep Emily safe.

SCTV
  • Ada’s assessment is about a woman with dementia living alone in her own home. In response to concerns about Ada's safety, a doctor undertakes an assessment of her capacity to decide where she lives. 

Links to Dementia Quality standard (QS1)
  • Statement 5

    People with dementia, while they have capacity, have the opportunity to discuss and make decisions, together with their carers, about the use of:

    • advance statements
    • advance decisions to refuse treatment
    • Lasting Power of Attorney
    • Preferred Priorities of Care.

Further information

Getting personal: Making personal budgets work for people with dementia

This 2011 report from the Alzheimer’s Society looks at the benefits and challenges of personal budgets for people with dementia. The report presents findings from a substantial survey seeking the views of people with dementia and their carers on this topic and makes a series of recommendations.

View the resource

Improving personal budgets for older people

This 2013 report from SCIE reviews research conducted between 2007 and 2012 on the uptake of personal budgets by older people in England. The report gives an overview of the challenges and solutions to improving choice and control for older people through the use of personal budgets and direct payments – and includes a particular focus on the needs of people living with dementia.

View the report

Making decisions

SCIE’s Dementia Gateway has resources to help support people with dementia, including written information, films, activities and e-learning This section looks at how to support people with dementia to make decisions about their care and support needs now and in the future. The section looks at: ‘Helping people make their own decisions’, ‘Can the person make the decision?’, ‘Making decisions in a person’s best interests’, and ‘Advance care planning’.

Visit the site

Making it real for people with dementia

This resource from the Think Local Act Personal partnership looks at 6 themes (active and supportive communities, flexible and integrated support, workforce, risk enablement and personal budgets) and examines how this can be achieved in practice for people with dementia. Case studies from a range of settings demonstrate how people with dementia can have choice and control in decisions affecting their care and support.

View the resource

Personalisation and dementia: a practitioners’ guide

This guide builds on the work completed by the Mental Health Foundation as part of its Dementia Choices project, which looked at self-directed support (personal budgets and direct payments) in social care for people with dementia. The guide shares the findings and the learning from the project.

View the document

Taking their side, fighting their corner

This book shares stories of the difference that independent advocacy has made to the lives of 16 people with dementia, many of whom are facing a major decision or review of their circumstances. The book brings together stories from members of the Dementia Advocacy Network (DAN), a national support network for independent advocates that worked with people with dementia. The Dementia Advocacy Network has now closed.

Visit the site

AT Guide (Assistive Technology)

AT Guide is an online self-help guide to how assistive technology can help people to live well with dementia. It is part of a larger website on assistive technology and dementia known as AT Dementia, run by the Trent Dementia Services Development Centre. AT Guide covers a wide range of daily living activities and gives advice and product suggestions.

Visit the site

Dementia Choices

This set of eight short films from the Mental Health Foundation is part of its Dementia Choices project, which looked at personal budgets and direct payments (known as self-directed support) in social care for people with dementia. The films each tackle a question, such as ‘How is someone assessed for self-directed support?’, ‘How does self-directed support benefit people with dementia and their loved ones?’, and ‘What are the challenges involved with self-directed support?’ A four-page leaflet , Dementia and self-directed support explaining self-directed support for people living with dementia, their family and friends is also available.

Visit the site

Dementia guide

This Alzheimer’s Society 2013 Dementia guide is for anyone recently diagnosed with any type of dementia and their close friends and family. The guide explains about dementia and also covers planning for the future, what services are available, and support for carers. The aim of the guide is that it is a starting point, helping people with dementia to live well, to be well-informed and therefore better able to have choice and control in decisions about their care and support.

View the resource

Mental Capacity Act resource

This SCIE online resource is a hub for a wide range of information and resources related to the Mental Capacity Act. The resource is aimed at a wide range of users, including those working in health and social care as well as family carers. It includes introductory information as well as more complex information for practitioners.

View the resource

Making it real for people with dementia

This resource from the Think Local Act Personal partnership looks at 6 themes (active and supportive communities, flexible and integrated support, workforce, risk enablement and personal budgets) and examines how this can be achieved in practice for people with dementia. Case studies from a range of settings demonstrate how people with dementia can have choice and control in decisions affecting their care and support.

View the document

Find carer services near you

This service enables carers to find their nearest carers centre through a postcode search. Local respite services for carers who are in need of a break are also listed.

View the site

Tools

Helen Sanderson Associates resources

Helen Sanderson Associates has developed a range of workbooks and a one-page profile that can be used to help a person receiving care and support – including people with dementia – to set out their views and preferences. The workbooks can be used for both planning and reviewing care arrangements: My life my choice, a Personal health workbook and Living well (which includes planning for end of life care). The one-page profile has three sections to be completed: an appreciation about the person; what is important to that person from their perspective; and how to support them well. The aim of the one-page profile is to enable care staff to see the person with dementia as a unique individual not as a condition. The resources are all free to access, and can be adapted.

View the resources

Talking Mats

Talking Mats is a communication tool developed by speech and language therapists at the University of Stirling. It enables people who have communication difficulties – including people with advanced dementia – to be better able to express their views and needs, using a simple system of symbols on mats. Talking Mats are now available in a digital format. All Talking Mats products are available to purchase via the Talking Mats social enterprise

Visit the site

This is me

This practical tool – a four-page leaflet produced by the Alzheimer’s Society – is intended for people with dementia who are about to receive care or support in an unfamiliar place, such as a hospital. The leaflet is to be completed by the person with dementia (with support as necessary) and includes questions about the person’s views, needs, preferences and anything that may be relevant to their experience of being supported by another person. The leaflet can be downloaded from the Alzheimer’s Society’s website or hard copies can be ordered by calling 01628 529240.

View the resource

Progress for providers: Checking your progress in delivering personalised support for people living with dementia

This self-assessment tool is aimed at care home managers who want to check their progress on delivering personalised support for people with dementia. The tool has three sections: ‘The person’, ‘The family’, and ‘The staff and manager’, also includes a template for an action plan – to be completed after the self-assessment. The full book (which includes an introduction, action plan and links to further resources as well as the tool) can be downloaded for free – or the tool can be downloaded separately.

View the tool