Dementia care: why we need to support the hidden workforce
There are an estimated 700,000 family and friends acting as primary carers for many of the 1 million people in the UK living with dementia. Nursing staff should take every opportunity to identify and acknowledge those families and friends providing informal care as recognition and validation of their role can open the door to information, advice and support that can sustain both the carer and the person they care for.
Nursing staff need to take every opportunity to identify and acknowledge those families and friends providing informal care for people living with dementia
Around 1 million people in the UK are living with dementia, many are supported by the 700,000 family members and friends who act as their primary carers. These informal and unpaid carers form a hidden workforce without whom our health and social care systems could not survive. Yet, despite their vital contribution, they often remain unseen and undervalued.
‘Too often, assumptions are made about an informal carer’s willingness or ability to take on the role, usually without any training, advice or support’
Caring for someone living with dementia can be difficult. Nurses can find it challenging to deliver care when people living with dementia become distressed or unable to communicate their needs verbally, but imagine how much harder that can be to deal with when supporting someone close to you.
Yet too often, assumptions are made about an informal carer’s willingness or ability to take on the role, usually without any training, advice or support. Many feel ill-equipped and unprepared, stepping into a caring role by necessity rather than choice, with limited understanding of dementia and how to care for themselves.
Informal carers often struggle to access appropriate services and feel unheard by health and care professionals
The consequences can be far-reaching as identified in Carers UK’s State of Caring 2025 report, affecting carers’ physical and mental health, relationships, finances, employment and social inclusion.
As highlighted in our evidence and practice article, How to support family carers with providing personal care for people with dementia, informal carers often struggle to access appropriate services and feel unheard by health and care professionals. Many do not even identify as carers, viewing themselves simply as family or friends supporting someone in the context of an ongoing relationship.
A good starting point is often the simplest: ask them how they are.
I urge all nurses to take every opportunity to identify and acknowledge those families and friends providing informal care. Recognition and validation of their role can open the door to information, advice and support that can improve outcomes for both the carer and the person they care for.
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