Quality statement 9: Independent advocacy
People with dementia are enabled, with the involvement of their carers, to access independent advocacy services.
When significant decisions are being made concerning the current and future care of someone with dementia, it is important that they can access independent advocacy services if they are not fully able to present their own views.
a) Evidence of local arrangements to ensure that people with dementia are enabled, with the involvement of their carers, to access independent advocacy services.
b) Evidence of proactive approaches to reach people with dementia who may have difficulty accessing advocacy services.
c) Evidence that people with dementia supported under the Mental Capacity Act 2005 are provided with access to advocacy in line with the code of practice that accompanies the Act.
Process: Proportion of people with dementia accessing independent advocacy services.
Numerator – the number of people in the denominator accessing independent advocacy services.
Denominator – the number of people with dementia.
a) Feedback from people with dementia that they have been enabled to access independent advocacy services.
b) Feedback from the carers of people with dementia that the person they support was enabled to access independent advocacy services.
People with dementia can have help from independent advocacy services to present their views.
Carers of people with dementia are involved in helping the person they support to access independent advocacy services to present their views.
Local authorities and others commissioning services work with providers to ensure the services they commission enable people with dementia, with the involvement of their carers, to access independent advocacy services.
Organisations providing care and support ensure people with dementia are enabled, with the involvement of their carers, to access independent advocacy services.
Social care and healthcare staff ensure they enable people with dementia, with the involvement of their carers, to access independent advocacy services.
Dementia: assessment, management and support for people living with dementia and their carers (2018) NICE guideline 97, recommendations 1.1.6 and 1.3.2
Personalisation – a rough guide (2012) SCIE guide 47
IMCA and paid relevant person's representative roles in the Mental Capacity Act Deprivation of Liberty Safeguards (2011, updated 2017) SCIE guide 41
Commissioning and monitoring of Independent Mental Capacity Advocate (IMCA) services (2009, updated 2010) SCIE guide 31
Dignity in care (2006, updated 2013) SCIE guide 15, Choice and control
Structure: a), b) and c) Local data collection.
Process: Local data collection.
Outcome: a) and b) Local data collection.
This refers to local protocols and specific actions contained in those protocols that ensure people with dementia can access independent advocacy services.
The Department of Health defines a carer as someone who provides unpaid support to family or friends who couldn't manage without this help, whether they're caring for a relative, partner or friend who is ill, frail, disabled or has mental health or substance misuse problems.
Action for Advocacy states 'Advocacy is taking action to help people say what they want, secure their rights, represent their interests and obtain services they need. Advocates and advocacy schemes work in partnership with the people they support and represent their views. Advocacy promotes social inclusion, equality and social justice.' This includes instructed advocacy and non-instructed advocacy for people who do not have capacity to instruct advocacy services on their own behalf. A non-instructed advocate seeks to uphold the person's rights; ensure fair and equal treatment and access to services; and make certain that decisions are taken with due consideration for all relevant factors, which must include the person's unique preferences and perspectives.
Independent advocacy services include, but are not limited to:
independent mental capacity advocates provided under the Mental Capacity Act 2005
relevant local user groups
When people with dementia lack capacity, decisions made on their behalf under the Mental Capacity Act 2005 should be made in line with the accompanying code of practice.
Recommendation 1.1.2 in the NICE guideline on dementia highlights that if needed, additional or modified ways of communicating (for example visual aids or simplified text) should be used.
Social care and healthcare staff should identify the specific needs of people with dementia and their carers arising from diversity, including gender, sexuality, ethnicity, age and religion. These needs should be recorded in care plans and addressed (NICE guideline on dementia, recommendation 1.13.1).