This Dementia Action Week, we are sharing what 2,016 carents told us about what it actually feels like to care for a parent with dementia.
They were part of the largest survey Carents has ever run: 4,293 adults caring for ageing parents, asked about their experience of the caring role, what it costs them, what society says about it, and what they have lost along the way. The findings form our new report, Dementia: Who Really Cares?
The findings are not comfortable. But they are honest. If you are caring for a parent with dementia right now, you may recognise much of what is in them.
Read the full report: Dementia: Who Really Cares?
Email this report to your MP
This submission came from 2,016 carents across the UK. The experiences behind it are ones Parliament needs to hear.
If any of this reflects your own situation, you can add your voice to it. MPs are more likely to act when a constituent writes to them directly. The tool below takes a few moments and sends a message to your local MP.
The silence most dementia carents keep
Most dementia carents are not talking openly about what they are carrying. Not because they have nothing to say. Because experience has taught many of them that it is easier not to.
60% of carents in our survey downplay their caring role in social situations. 56% feel ashamed admitting that caring is hard. 44% say being honest about how much they do feels risky.
One carent put it plainly:
"People ask how you are or how it's going but don't really want to hear how hard it ACTUALLY is or what caring for someone full time ACTUALLY entails. So it's just easier to say I'm fine."
That came up in form after form. Different words, the same truth.
The fear behind the silence is specific and consistent. Fear of being seen as weak. Fear of being defined by a role you did not choose. Fear of burdening someone else. Fear of responses you have already had or can already predict.
Always on
96% of carents said they are always on alert, even when they are not physically present with the person they care for.
For dementia carents, that alertness can take on a particular character. It is not only waiting for the phone to ring. It is holding the awareness of a person who may not know where they are, who may not remember you will be back, who may be frightened or confused at this moment, as you sit at your desk or try to sleep or talk to someone else. That awareness can run underneath everything else.
"Never off my mind. Always waiting for a response from the alarm system, a lot of the time on edge. I can never really relax. I doubt I can cope with any further issues, and there are always more issues."
The system and its timing
89% of carents said the support system only reacts when things reach crisis point.
This is not only a resource problem. It is a design problem. Assessments tend to be triggered by crisis, not by need. By the time someone crosses the threshold, many carents have been managing without any support for months, sometimes years. The system meets people at their worst point and responds as though the crisis came from nowhere.
For dementia carents, this matters particularly. The condition does not arrive with a single acute event. It is gradual, cumulative, and almost impossible to point to as a moment. Carents can find themselves far into a situation before anyone in the system notices them at all.
"Finding support and getting it via adult services was the most stressful thing I have ever had to do. I was passed from pillar to post with no one taking responsibility. Eventually, with the help of our local MP, we got everything sorted. It took 15 months."
What people say when carents do speak
81% of carents said that caring for a parent is treated by society as just what you do, not something that deserves recognition or support.
When carents do speak about their experience, the responses they encounter most often include:
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"She's your mum. It's only family. They cared for you when you were young."
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"Just get on with it, it's what you have to do."
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"Can't you just put them in a home?"
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"You are lucky to still have them."
These are not unusual responses. They are the norm. And they are part of why so many carents stop trying to explain.
The dismissal does not only come from family and friends. It can come from GPs, who focus on the patient and overlook the person beside them. From social workers, who acknowledge the carent in an assessment and then provide nothing consistent. From employers, who underestimate what caring for a parent with dementia actually takes from a person day to day.
75% of carents in our survey said they receive less sympathy and recognition than new parents. 52% said caring for a parent is a taboo subject compared with having a baby.
The gap is not explained by the difference in practical demands. It is explained by cultural value: one is a beginning, and the other is not, and we have not yet extended to the ending the same social permission to struggle, to ask for help, and to be seen.
What needs to change
We are calling on the Government to take three specific steps.
Appoint a National Dementia Lead. There is currently no single point of accountability within Government for dementia. A named lead, responsible for coordinating policy across health, social care, and employment, would ensure that both the person with the diagnosis and those caring for them are visible to the system.
Fund dementia in line with its true cost and impact. Dementia is the leading cause of death in England and Wales. Its costs fall disproportionately on families, whose unpaid contribution to the UK economy is valued at more than £100 billion a year. With the number of people living with dementia projected to double by 2040, public investment must reflect that reality.
Guarantee proactive support for carents from diagnosis onwards. 89% of dementia carents say support only arrives when things have broken down. A dementia diagnosis does not affect one person. It affects two. Carents should be identified at the point of diagnosis and offered consistent, proactive support from that moment forward. Not left to reach crisis before anyone thinks to ask how they are doing.
Beyond policy, we are also calling for change closer to home:
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GPs should identify carents, record their role, and routinely ask how they are doing, not only the patient beside them
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Workplaces should go further than the Carer's Leave Act 2023 and offer genuine flexibility; 73% of employed carents in our survey said workplaces support new parents more than people caring for ageing parents
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A single point of contact should exist for carents navigating health, social care, and financial systems simultaneously
If you are caring for a parent with dementia and you recognise any of this, you are not alone. 2,016 people in our survey confirmed the same pattern. Your experience is real, it is shared, and it deserves to be named.
