Reclaiming the Narrative of Carers

This is a blog by Carer Involvement Lead Beau Nieuwenhuijs to celebrate carers of people with dementia and to support Dementia Action Week, Dementia Awareness Week and Carers Week. 

brave, carers are brave. I mean, I don’t think I’m brave but they certainly are”

Carers of people with dementia are brave, just as they are strong, caring, kind, selfless, highly skilled, resourceful, and resilient. Just a fraction of the words that could be used to describe carers, however, very few carers will identify or associate themselves with these words and hardly anyone else will attribute these qualities to an unpaid carer. Across the UK we have a system where carers don’t feel valued or supported for the contribution they make. They often don’t have a seat at the table. If they do, it’s usually a tokenistic gesture and they are not genuinely being listened to about matters that concern them. There is a systemic and societal expectation that family members or loved ones will assume the role of carer when someone is diagnosed with dementia.

if I don’t do it, who will?”

In addition to that, they are often not recognised as individuals in their own right with their own needs both in their caring role and in their life outside it. This is illustrated strongly when it comes to resourcing, services and information, carers are being “added onto” or after the person with dementia. Their support is ‘implied’ in the support for someone with a formal diagnosis. This is reflected in the formal and informal language that is used. If carers are mentioned, it is generically in the adjunct – “and their carers”.

As a result, these assumptions, expectations and implied recognition are internalised. A carer will not question whether or not they want to support a relative or if they even have the capacity to do so. A carer will not think about their own needs. Instead they think of the needs of the person with dementia. In many of the workshops and sessions that we facilitate at tide we start by asking the carers to introduce themselves and tell the group a bit about themselves. Without exception they will talk about the person they are caring for. A carer will often not even recognise, or in many cases, be reluctant to admit they are a carer. Instead they will say they are someone’s husband, wife, son, daughter, friend or neighbour when in fact the level of care and support they are systemically expected to provide doesn’t necessarily fall within the familial or romantic relationship, why can’t they be both?. There is an expectation that the carer becomes a planner; a care manager; an advocate; an expert on dementia; an expert on medication; an expert on communication; an expert on the health and social care and benefit systems. When they take up these roles and are not valued or recognised for it, they do not recognise or value it in themselves. This is not fair, this is not equal and this is not beneficial for anyone.

At tide we believe that carers are the agents of change in their own lives, their communities and wider society. We want carers of people with dementia to realise the true value of who they are, what they do and their potential. We see a world where the human rights, voices and needs of carers are fundamental to the structure of society. We work to achieve this through our development programme, involvement network and influencing opportunities. We want carers to reclaim the narrative of what it means to care for someone with dementia, own their experience and take pride in it. The definition of a carer with all the expectations, assumptions and implied recognition is too limiting to what the true lived experience is like. We need carers to break through these barriers and reclaim this part of their lives. It’s time to challenge the stigma attached to caring, to stop seeing caring as disabling the person with dementia but instead see caring as enabling, valuable and something you are proud to tell people that you do

We need to speak up openly and honestly about the unique reality of caring for someone with dementia. Not in an attempt to glorify carers or label their experiences as positive or negative. We want carers to own their truth – all of it, the good, the bad, the ugly, the funny, the rewarding and the difficult aspects of it. We recognise that every single carer of someone with dementia has a different and unique experience. They are not defined by their experience and their caring role just in the same way a person with dementia is not defined by their diagnosis. Every truth deserves to be told – only then will we achieve the vision of a world where the human rights, voices and needs of carers are fundamental to the structure of society.

“carers are superhumans”