Statement 9: People with dementia are enabled, with the involvement of their carers, to access independent advocacy services

Key messages

What does this mean for care providers?

The Mental Capacity Act (2005) confirmed the importance of advocacy services for people living with dementia. This piece of legislation states that it must be assumed everyone has the capacity to make decisions until proven otherwise, and that every effort must be made to support individuals to make their own decisions. And even when they are no longer able to make decisions, their views, wishes and preferences must be taken into account. Many people will receive this support from within their family, but this is not always possible and being able to access independent advocacy services is vital.

The Act also introduced the role of Independent Mental Capacity Advocate (IMCA), to provide a legal safeguard for people who lack capacity to make specific important decisions, often in relation to where to live or serious medical treatment options. An IMCA is usually used when no-one independent of care services is able to represent a person’s interests.

Care providers need to ensure everyone understands the important contribution that an advocate can make – ensuring people living with dementia are included in all decisions that affect their lives, are enabled to make decisions, and to express their views, wishes and choices – and the formal safeguarding role they take when the person lacks capacity. They should also know where and how advocacy can be accessed in their locality, and share this information with families. Providers must also ensure they know who should have an IMCA and when; be aware of who can refer to the IMCA service and what information is needed; and know where the local IMCA provider is based and how to contact them if need be.

Why is this important to carers?

Making decisions can be difficult at any time in life – and particularly if communication, thinking and planning are made more difficult by dementia. Family members don’t always agree on how best to support a person with dementia. Health and social care systems can be difficult to navigate and understand, and decisions may have significant financial and legal implications. An advocate can be a critical person at times of decision-making for a person with dementia – helping the person communicate their views and advocating for their rights and interests. Carers can play an important role in supporting an advocate who is working to support their relative.

What does 'advocacy' mean?

'Advocacy' means ensuring that a person's views are heard, so that their needs are met. The person who offers this support is referred to as an 'advocate'.

Advocates work for a wide range of people (children and adults), with a wide range of needs (mental health, learning disabilities), and from a variety of organisational settings (voluntary organisations, hospitals). Advocates rely heavily on good communication skills. They should be well-informed about the Mental Capacity Act and have a firm grasp of issues such as capacity, best interests and advance decisions.

One of the new elements of the Mental Capacity Act 2005 was to establish the legal right to advocacy for those who lack mental capacity – in certain circumstances – provided by Independent Mental Capacity Advocates (IMCAs). IMCAs are generally involved in supporting people who have no family or friends to represent them, but in some circumstances (for example, where safeguarding concerns have been raised), an IMCA will be involved in liaising with family and friends.

How might an advocate be able to help a person with dementia?

Advocacy is described as 'instructed', where a person has mental capacity and can give instructions and consent, and 'non-instructed', where a person with dementia may not be able to give clear instructions for themselves for what they want – but they are still in need of support to protect their rights and meet their needs. 'Mental capacity' refers to the ability to make a particular decision: a person may be described as 'lacking capacity' because they have problems with understanding, retaining, evaluating or communicating information in relation to a particular decision.

Whether advocacy is statutory (such as via an Independent Mental Capacity Advocate ( IMCA)) or non-statutory, the advocate's job is to work hard to get to know the person with dementia – their history, preferences, past wishes and interests – as a way of guiding them in how they support the person in the present. They will aim to develop a good rapport with the person and, if at all possible, will offer support to encourage the person to be able to speak for themselves. At all times, the advocate will try to represent the person’s interests and views as well as possible (in meetings and in formal reports), drawing on their knowledge of the person and the person’s wishes. An advocate’s input is usually time-limited and issue-based: that is, they are involved in order to support the person with dementia to make a decision on one particular issue.

How do I find an independent advocate?

It can be difficult to know where to start looking for an advocacy service – partly because advocacy services are not available in all locations, and partly because advocates operate out of a range of different organisations (voluntary sector or statutory services). There is no national directory of advocacy services working with people with dementia.

Having identified an advocacy service, it can then be hard to know whether the advocates are experienced in working with people with dementia –this may not be clear on publicly available information or websites. It may be best to start by contacting the service by telephone and asking a few preliminary questions.

The website for the Older People's Advocacy Alliance includes a list of members of the alliance – and this could be a good starting point.

What is the relationship between a carer and the advocate?

Carers have a critical role to play in advocating for the person they are caring for, and if necessary, helping the person to access advocacy services. If an advocate is involved, carers can support the advocate's work by sharing important background information and their own perspective – what helps with communication or information about the person’s life history.

Sometimes carers may be in dispute with or try to overrule the person with dementia – and in these (and all) situations the advocate’s role is to empower and safeguard the person with dementia and make clear their views and wishes.

Key resources

Practical tips and information

The Dementia Advocacy Network is a national support network for advocates, and provides information and training and helpful resources.

SCIE's IMCA resources include practice guides and film in relation to using IMCA's in accommodation decisions, care reviews and safeguarding

Age UK and Alzheimer's Society may know of advocacy services in local areas and be able to provide contact information.

SCTV
  • Peter's IMCA explains the role of the IMCA – which includes communicating with the person who lacks capacity, consulting others and writing a report.
Links to Dementia Quality standard (QS1)

Further information

An advocate's guide to independent non-instructed advocacy: Older people and dementia. Principles, practice and guide to further resources

This 2013 guide from Age Concern Cardiff and the Vale of Glamorgan is a very helpful general introduction to advocacy. The guide explains non-instructed advocacy for people with dementia: this refers to situations where the person cannot give clear instructions themselves for exactly what they want, but is still in need of support to protect their rights and meet their needs. The guide explains capacity, the basics of the Mental Health Act 2005, and explains the role of Independent Mental Capacity Advocates (IMCAs), and looks at how communication problems can be misunderstood as lack of capacity.

View the document

Dementia advocacy in a time of austerity

This 2013 report from the University of Coventry shares the findings from a study that evaluated dementia advocacy provision in five different parts of England. The study explored a number of issues including the availability and accessibility of advocacy provision, the benefits and challenges of providing advocacy for people with dementia, and the support needs of advocacy organisations. The report includes a clear introduction to advocacy for people with dementia (see pages 18-20).

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.

View the document

Tools

Generic communications toolkit

The charity Advocacy Services in Staffordshire (ASIST) has worked with a range of health professionals to develop this communication toolkit, which includes 30 cue cards with simple pictures. The toolkit is not specifically developed for use with people with dementia – but has been developed by ASIST, an organisation that does offer an advocacy service for people with dementia. It is available to purchase directly from ASIST.

View the resource

Older People's Advocacy Alliance: Services

This national membership based charity supports, promotes and develops independent advocacy services for older people. Its website hosts a directory of advocacy services for older people, where you can search by region to identify a local advocacy provider.

Visit the site

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 pictures on cards. 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