Statement regarding cuts to Personal Independence Payments for people living with dementia

YoungDementia UK wants to place on record our profound concern at the growing number of media reports about younger people living with dementia who are having their benefits cut or stopped following assessments tor Personal Independence Payments by the Department of Work & Pensions.

Dementia is a terminal condition for which there is no cure.  It causes progressive mental and physical degeneration. People diagnosed with dementia have to live day to day in the knowledge that they are living with a life-limiting condition.  However, In the face of this adversity people living with young onset dementia live their lives as fully as they are able.  Often this requires the support of family, friends and professionals who help them to continue to lead active and fulfilling lives. 

As a person’s young onset dementia progresses, maintaining employment long-term is rarely possible.  Government benefits provide a financial safety-net for many people of working age who may still have mortgages to pay and dependent children.  These people are not work-shy or benefits scroungers.  Benefits such as PIP and carers allowance are a life-line that enable them to maintain their independence and to lead positive, engaging lives that stimulate them mentally.  

Anecdotal evidence suggests that PIP assessors are not trained medically and so are likely to have little understanding or experience of the progressive nature of the condition, and its impact on life.  The decision to remove a person’s benefits payments is disabling and the appeals process is painfully slow, which can lead to financial hardship, stress and isolation, in turn hastening a decline in mental wellbeing. 

We are calling for an urgent review of both government policy and the benefits assessment process for people living with dementia.  We want to see an end to this deeply unfair situation whereby people living with young onset are penalised for developing coping strategies and support networks that enable them to live as well as they can.  We fully support the work of individuals and organisations who are campaigning on this issue. 

We end with the words of Anne, a mother of five who was diagnosed with dementia at the age of 46. ‘What do these people not understand about the word terminal? Do they not realise what we go through or how extremely difficult it is to pick yourself up after you’ve been told you’re dying and not give in?  Instead of helping us to live better, we are being pushed into isolation and the spiral of depression. It is terrible that we have to fight the stigma of dementia but even worse that we have to fight for our basic rights.’

16 August 2017

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