Last Updated: August 13, 2026
Beth Britton explores what advocacy is, how it can benefit people with dementia and their families and how to access advocacy services.
When you can’t express your wishes or stand up for your rights, perhaps due to dementia or another physical or mental health condition, life can feel very isolating.
Being in this situation when decisions are being made about your health and care is disempowering and can lead to choices being made that don’t reflect what you want.
As a former carer to my dad who had vascular dementia for 19 years, and as a consultant to services who support people with dementia, I feel passionately that independent advocacy is something that the 944,000 people living with dementia in the UK should know more about.
People with dementia are identified as one of the groups who can potentially really benefit from advocacy, particularly if a person is assessed as having lost their mental capacity. Having an advocate involved in a person’s life can also enable care professionals to be as certain as they can be that they are providing care and support that is as close to what the person wants as possible.
To understand the vital role of advocacy, I spoke to VoiceAbility, one of the UK’s leading advocacy charities, to understand more about what they offer and some of the outcomes from their support.
What is advocacy?
Advocacy is free, independent support to help a person to have a say in decisions about their health, care and wellbeing. An advocate will listen, help the person say what they want – and don’t want – and support the individual to understand information about their situation. They can explain a person’s options, and plan with the person about what to do next.
If a person can’t tell their advocate what they want, their advocate can still make sure their rights are protected. They’ll work with the person and the important people in their life to understand and communicate the person’s views and wishes.
How can advocacy support positive outcomes for people with dementia?
Finding ways for people with dementia to live safely and have their voice heard is imperative. Many people with dementia either don’t have family members to informally advocate for them, or they would benefit from independent professional advocacy to resolve complex issues in their life, as VoiceAbility’s advocate Cathy did for Agatha*:
Agatha was living at home with her husband. When her VoiceAbility advocate Cathy visited, Agatha was confused, with unwashed hair, crumbled bread for dinner and empty cupboards. Her husband refused to accept that Agatha was unwell and was aggressive with professionals. When she was admitted to a care home, Agatha told Cathy that she didn’t want her husband to live in the same home. Cathy supported Agatha to tell the local authority, and he was placed elsewhere with support from his own advocate.
Since then, after facilitated visits, Agatha has chosen to move into her husband’s care home – into her own room – so that they can maintain their relationship and their independence. With Cathy’s support, Agatha was able to move away from an unsafe situation, but her wishes were always central in decisions about her life.
How can families benefit from advocacy?
Although we did our best to represent my dad’s wishes when he could no longer speak up for himself during his years with dementia, it was sometimes really difficult. Many families experience similar challenges, including Tina* who was supported by VoiceAbility through struggles with her mum’s social care:
Tina’s mum Daisy* had an advanced dementia diagnosis. Tina was very unhappy with the quality of Daisy’s care, but struggled to fit meetings with social workers and care staff around her full-time job. Tina’s VoiceAbility advocate Janet listened, supported Tina to work with the professionals involved and explained her options, including challenging decisions about funding and where Daisy was living.
After going to court it was agreed Daisy could move to a new nursing home, and Tina identified a home she was much happier with for her mum. After previously being turned down, Daisy was also granted full Continuing Healthcare funding which made the new home affordable for them both.
Your right to access advocacy
I asked VoiceAbilty’s Chief Executive, Jonathan Senker, about their work, the challenges for people accessing advocacy and what the charity aims to achieve:
‘VoiceAbility has been providing advocacy for over 40 years, and 40% of the people we supported last year were over 65. The eligibility criteria sound complex, but health and social care professionals must let you know how to access advocacy. We know this doesn’t always happen, so we’re constantly working to improve awareness amongst professionals, and for all people who need support to have their voice heard and their rights upheld.
‘Our aim is to support people to live a good life, whatever that looks like for them. That could be as simple as making sure you get to eat the food you like, to supporting you when you aren’t being listened to in big decisions like where you live.’
Finding an advocate
Your local council’s social services department should be able to advise who provides advocacy services in your area. Alternatively, you could contact:
VoiceAbility – Advocacy services in various locations in England and a benefits advocacy service for disabled people across Scotland. Find out what VoiceAbility offers in your area and make a referral online.
POhWER – Advocacy services across England.
The Advocacy People – Advocacy services from Milton Keynes southwards to Cornwall in the west and Kent in the east.
Scottish Independent Advocacy Alliance (SIAA) – Advocacy in Scotland.
Further resources
Alzheimer’s Society provides information on navigating the social care system when you are living with dementia, including getting dementia advocacy support.
Dementia Carers Count provides information on types of advocacy for people with dementia.
*Names have been changed to protect people’s privacy
About the author:
Beth Britton is an award-winning content creator, consultant, trainer, mentor, campaigner and speaker who is an expert in ageing, health and social care. Visit Beth’s website for more information.
