Advocacy and dementia – A vital partnership

Dementia poses many challenges for those living with it or those caring for someone with it, not least getting their voice heard. Our wishes, views, needs and preferences are fundamental to our lives, but dementia can begin to erode our ability to articulate those clearly, and as the disease progresses, make it impossible to maintain a clear say in the decisions that govern our lives without some form of assistance.

For many people, this will involve their family stepping in. This was certainly true in my father’s case; we spoke up for him and his interests every day during his years of living with dementia. But what if your family are not willing or able to stand up for you, disagree with your vision for your future, or indeed you don’t have someone close to you who you trust to articulate what you are struggling to? Equally what if you are caring for someone with dementia and simply not being heard by the professionals who are taking decisions that directly impact upon you?

This is when advocacy comes into its own. An advocate is there to provide that voice for you. They are not there to offer their own opinions or second guess yours. Their role is to form a professional relationship with their client, and through that gain an understanding of what that person wants from the care they receive and the decisions that influence their life. Having done that, they are then tasked with imparting those views to ensure that every aspect of that person’s life and care has their needs and wishes at its heart.

People with dementia and their carers are at huge risk of marginalisation, leading to information being withheld, dignity and respect being eroded, decisions being taken for them and without their knowledge or consent, discrimination, inequality, difficulty in accessing health and social care services, loss of independence and opportunities for personal growth, and a general withdrawal from participation in all aspects of their life.

For a long time it was believed that people with dementia were stupid or in need of having their lives controlled. With the Mental Capacity Act and the Deprivation of Liberty Safeguards came a complete change of emphasis, with the prevailing view now being that everyone has capacity until it is proven otherwise.

This has given rise to far greater reliance on advocacy services, simply because we have finally acknowledged that people with dementia must have a voice, and if it can’t come from their lips then they have every right for it to come from someone else’s. Just how do you become an effective advocate for a person with dementia though?

Ideally advocacy is a service best sought in the early stages of someone’s dementia. If the person has had a diagnosis and is prepared to face up to the reality of having a progressive and terminal disease, then they can seek to make plans for their future. This would include considering who will speak up for them when they are no longer able to articulate their wishes as they would like to, and ensuring that if that person is to also be their carer, that they are properly supported in their role. Of course in reality, advocacy is often brought into someone’s life far later, and as a result a very skilled advocate is needed to ensure a correct representation of views that may be very difficult to ascertain by this stage.

The nature of dementia doesn’t make advocacy easy. The disease doesn’t have a rule book, presenting itself differently with each individual, and the fluctuating nature of symptoms can pose significant challenges. One day someone can appear far more lucid than the next, their opinions, views, behaviours and memory can change daily, as can their ability to make decisions, and obtaining consent for support may need to become a constant requirement.

Gaining an insight into how someone with dementia expresses themselves, and judging their level of understanding takes time and patience. Looking at someone’s history and any previous expressions of wishes are also key factors in navigating such a minefield. How much capacity they have on any given day can ebb and flow, and good communication skills are vital to ensure that an advocate is as effective and true as they can possibly be as the voice of someone with dementia.

Being an advocate is a role of huge responsibility, but also huge privilege. Giving a voice to someone who is losing theirs through dementia is a highly rewarding job, but also an increasingly vital one. With more people than ever before living with dementia, and having known people in my dad’s care home whose next of kin was a social worker or a solicitor, I have a huge appreciation for the need to ensure that everyone, no matter what their background, can get their voice heard. To put it simply, in good dementia care advocacy should come as standard.

Until next time...

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