Issue:

Dementia is a progressive, terminal neurological illness, yet it is treated as a social care issue rather than a medical one. As a result, families are routinely denied NHS funding and left to cope alone with complex, life-limiting care needs. People with dementia lose the ability to communicate reliably and advocate for themselves, but assessments often fail to reflect the reality of the illness, placing an unfair and devastating burden on families.

My experience:

My family is currently caring for my grandmother, who is living with advanced dementia and is nearing the end of her life. Over time, we have watched her lose her ability to understand what is happening around her, communicate her needs, and recognise the people she loves. She becomes distressed, cries without being able to explain why, mumbles or speaks without making sense, pulls at her clothes and blankets, and has suffered countless infections as her condition has progressed.

Despite this, she was assessed as being able to “communicate reliably” and was therefore deemed ineligible for NHS Continuing Healthcare funding. This decision does not reflect the reality of her illness. Being able to nod or point is not the same as being able to consistently understand, process, and express needs. Dementia fluctuates, and brief moments of apparent clarity should not be used to deny vital support.

My grandmother has given so much to her community over the last 50 years she ran a guest house, was part of the hoteliers’ association, helped charities, and supported the homeless. She dedicated her life to helping others, yet now, instead of receiving the care she deserves, she is being treated like a disposable burden. Families like ours are left fighting for her most basic care needs rather than being able to spend precious time ensuring her comfort, dignity, and peace.

On top of this, the local council is attempting to move her from her current home, which would add unnecessary stress and confusion at a stage when stability is crucial. Instead of focusing on comfort and dignity in her final months, we are forced to argue against decisions that do not reflect her needs or best interests. This will frighten her, accelerate her decline, and put her life at risk.

What I’m asking from this petition:

We are calling on the UK Government and NHS England to:

 1. Recognise dementia as a terminal neurological illness, not a social care problem

2. Reform NHS Continuing Healthcare assessments, including a new dementia section, so people with dementia are assessed fairly, including fluctuating cognition and communication difficulties

3.Provide automatic and meaningful financial and practical support for families caring for people with dementia

 4.Ensure people with dementia receive dignity, safety, and proper care, so families can spend time with their loved ones instead of fighting for basic care needs