Statement 3: People with dementia participate, with the involvement of their carers, in a review of their needs and preferences when their circumstances change

Key messages

What does this mean for care providers ?

Care providers will have a written record of each person’s needs and preferences, and how these are being met. But circumstances can change quickly, for a variety of reasons – perhaps as a result of illness or a fall; a change in what support is available from family and friends; a steady deterioration of the person’s dementia; or a hospital admission.

Care providers will have a process in place for regularly reviewing the care and support provided to each individual, but it is important that all staff understand and recognise the sorts of changes that might indicate the need for a more urgent review and know how this can be arranged. People living with dementia and their carers need to be involved in agreeing when the review will take place, who will be involved, and whether any extra support is needed for the person to fully participate. It is also important to explain what will happen before starting the review and to provide a written record of any changes that have been agreed. And care providers need to be open to changes in preference as well as need – having dementia doesn’t mean you can’t change your mind. 

Some reviews will be the responsibility of social services, and it is important that care providers recognise when this is the case and know how to request a review. And reviews should occur at regular intervals anyway, with families involved, to ensure that everyone has a good understanding of the situation and to maintain open and honest communication. 

Why is this important to carers ?

A person with dementia should have a review of their needs when their circumstances change – for example, when there is a deterioration in their physical health; when they develop new dementia symptoms or when there is a change in their carer’s circumstances. The person with dementia may need support to participate in the review, and carers are key to providing this support.

What does this term ‘review’ mean for a person with dementia?

People with dementia have the right to a community care assessment by their local authority. If the person is eligible for funded care, the local authority must develop a care plan, setting out the care that will be provided. A person should then have regular reviews of their care plan, although ‘regular’ in practice may only mean once a year – or less often. 

Reviews are an important part of the care planning process: for people living in the community who receive home care support as well as people living in care homes. Usually the local authority social worker or care co-ordinator conducts reviews, but they may also invite other people to attend also –a community mental health nurse, perhaps, or an occupational therapist. 

A person with dementia also has a right to a review when their circumstances change. A change in circumstances could be an issue that affects the person directly, such as deterioration in health or something that affects their carer, such as a move to another area. The person or the carer or the care provider should contact the local authority when they believe that a review should take place. The aim of the review is to reassess the person’s care needs and to make decisions about care for the future. 

As a carer, how can I support my relative or friend to participate in reviews?

A carer, your input at reviews is very important: you can support the person with dementia to prepare for the review ahead of time, for example, by writing things down beforehand that need to be discussed at the meeting (such as problems and practical issues).

You can also help the person to contribute as much as possible during the review, perhaps just by helping the person feel comfortable and at ease, or helping to explain anything that the person cannot follow. You can help the person share the important details of their life history in such a way that care staff have a better understanding of the person’s needs, preferences and interests. This may be through a photo album, a scrapbook, or a more structured format, such as the ‘This is me’ leaflet developed by the Alzheimer’s Society. The Mental Capacity Act 2005 requires that the view of the person with dementia should be sought whenever possible and if not possible, that decisions should be made in the best interest of the person.

You also have a vital contribution to make in presenting your own views on the person’s change of circumstances. 

As a carer, when can I ask for a review and who should I ask? 

It’s important to recognise that your needs matter as much as those of the person with dementia. If you can no longer offer the same level of support because, for example, your family circumstances change or you become ill then this will have an impact on the person with dementia and you must be supported to make changes to the caring relationship as necessary. 

Carers are entitled to ask the local authority for an assessment of their needs. Following the assessment, you will be given information about any services and support that can be provided. You may not be offered regular reviews, but if your  circumstances change, you  should contact the local authority and ask for another review. You have the right to an assessment, even after the person with dementia you care for has entered residential care. You should also register as a carer with you GP practice. 

Find out more about carers assessments on the NHS Choices or call the Carers Direct telephone helpline linked with the NHS Choices website (0808 802 0202). This helpline offers support and advice for carers seven days a week. There are a range of charities and voluntary organisations, locally and nationally, that campaign and offer support for carers of people with a wide range of needs. Some local areas offer support for carers of people living with dementia specifically. Find out more at the Alzheimer’s Society, Carers UK and Carers Trust.

What can I do if I don’t feel that the rights of the person I care for or my needs have been taken into account?

If you feel that the local authority has not treated you or the person you care for  fairly, you should follow the council’s complaints procedure. Begin by trying to speak with the relevant line manager, but then consider making a formal complaint. Look on the local authority website or make contact by telephone. 

If the response is not satisfactory or the complaint involves another service, contact the chair of the local Healthwatch. Healthwatch is the new consumer champion for both health and social care. It exists in two forms – the national Healthwatch England and 192 local Healthwatch organisations across England. To find your nearest Healthwatch, look at the find a local Healthwatch page.

What if a time comes when the person I care for needs to move into a care home? Who can I talk to?

Before a person with dementia moves into a care home, it is important to get advice about the kind of care that they will need (will it be regarded as ‘personal care’, available in a residential care home, or ‘care with nursing’ available in a nursing home?) and their financial situation. The local authority may pay for their care, but funding is means tested. The NHS may pay for some or all of the care, and this is not means tested. Everyone has the right to an assessment and the local authority is the organisation that leads on this. A social worker will explain what financial support, if any, is available. The Alzheimer’s Society booklet, When does the NHS pay for care?  is also a useful source of information.  

Key resources

Practical tips and information

Helen Sanderson Associates offer a range of workbooks that can be used to help people plan what they need and want from care services and prepare for reviews. 

The ‘Communicating well’ section of SCIE’s Dementia Gateway offers some helpful information about effective communication with people who have dementia. This is crucial to genuine participation in reviews.

Further information

Communicating well

SCIE’s Dementia Gateway has resources to help support people with dementia, including written information, films, activities and e-learning This section looks at communicating well with people with dementia – an essential starting point for supporting people with dementia to be able to participate in reviews of their needs and preferences. The section covers five areas: ‘Understanding dementia’, ‘The person behind the dementia’, ‘Having a good conversation’, Behaviour as a form of communication, and ‘Communication in the later stages of dementia’.

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Making decisions: a guide for family, friends and other unpaid carers

This 2009 resource is one of a series guides prepared by the Mental Capacity Implementation Programme explaining the Mental Capacity Act 2005. The guide covers questions such as ‘Who decides whether someone has capacity?’, ‘What happens if a person lacks capacity to make decisions for themselves?’ and ‘When should I expect to be consulted?’, and ‘What are advance decisions to refuse treatment?’

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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.

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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.

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‘Nothing ventured, nothing gained’: risk guidance for people with dementia

This 2010 guidance from the Department of Health reviews the issues and evidence on risk and risk enablement in people with dementia. It goes on to propose a 4-step ‘Risk enablement framework’: understand the person’s needs; understand the impact of risks on the person; enable and manage risk; and risk planning (with an accompanying template for recording an individual’s profile for each step). The guidance includes good practice tips and case examples.

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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.

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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.

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MCA Audit tools – list

This list appears on SCIE’s Mental Capacity Act Resource website, and holds links to 9 different audit tools for assessing implementation of the Mental Capacity Act within an organisation, at practitioner level and at an organisational level.

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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.

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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

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