Sign our petition to #CureTheCareSystem

Nearly a million UK families are struggling to care for their loved ones with the dignity and support they deserve. Decades of underfunding have led to a social care system that’s difficult to access, costly, inadequate and unfair.

While dementia isn’t curable yet, the care system is.  

We are calling on the Government to cure the care system now by committing to:  

  • Publication of a clear, budgeted, plan with milestones, with reform underway this year 
  • Ensuring their reforms consider not just funding, but also improving the quality of care that people receive.   
Read letter to the Prime Minister

Dear Prime Minister,

Right now, we can’t cure dementia – but you can cure our care system. The social care reforms you bring forward must prioritise the need for high-quality dementia care, free at the point of use. More than 35,000 people with dementia have died of Covid-19, and people living with dementia have experienced significant deterioration in their condition due in large part to interrupted health and social care. After such a devastating fifteen months, transforming dementia care must be the legacy of the pandemic.  

At least 70% of care home residents and approximately 60% of domiciliary care users have some form of dementia, meaning that reform plans for social care must prioritise the needs of people affected by dementia. Due to reasons such as a lack of dementia-specific training for hard-working care staff, and the disconnect remaining between the NHS and social care, the social care system struggles to provide the high-quality, person-centred dementia care that people deserve. Reforming social care must result in improved outcomes for people affected by dementia. 

Accessing respite support at the right time allows family carers to maintain their wellbeing, and ensures people with dementia can stay in their own homes for longer. Too many family carers reach a point of crisis before receiving help. Without the correct support, a dementia diagnosis claims more than one life as families battle for the right care for themselves and their loved ones. 

Dementia care costs can be devastating. As you explained on the steps of Downing Street in 2019, people are being forced to sell their homes to pay for care. It isn’t only people with dementia facing these hugely difficult decisions, it’s their partners, parents, sons and daughters too. NHS care is provided according to need and is free at the point of use. As a matter of fairness, dementia care must be delivered on the same principle.  

We ask you to commit to:  

  • Publication of a clear, budgeted, plan with milestones, with reform underway this year 
  • Ensuring your reforms consider not just funding, but also improving the quality of care that people receive

We look forward to hearing how you plan to ensure that the needs of people with dementia are front and centre in your reforms.

Best wishes,  

Kate Lee  
Chief Executive, Alzheimer’s Society 
 

Read letter to the First Minister of Wales

Dear First Minister,

Right now, we can’t cure dementia – but you can cure our care system.  The social care reforms you bring forward must prioritise the need for high-quality dementia care, free at the point of use.  

More than 35,000 people in the UK with dementia have died of Covid-19, and people living with dementia have experienced significant deterioration in their condition due in large part to interrupted health and social care. After such a devastating fifteen months, transforming dementia care must be the legacy of the pandemic.  

At least 70% of care home residents and approximately 60% of domiciliary care users have some form of dementia, meaning that reform plans for social care must prioritise the needs of people affected by dementia. Due to reasons such as a lack of dementia-specific training for hard-working care staff, and the disconnect remaining between the NHS and social care, the social care system struggles to provide the high-quality, person-centred dementia care that people deserve. Reforming social care must result in improved outcomes for people affected by dementia.  

Accessing respite support at the right time allows family carers to maintain their wellbeing, and ensures people with dementia can stay in their own homes for longer. Too many family carers reach a point of crisis before receiving help. Without the correct support, a dementia diagnosis claims more than one life as families battle for the right care for themselves and their loved ones.   

Dementia care costs can be devastating. As the Prime Minister explained on the steps of Downing Street in 2019, people are being forced to sell their homes to pay for care. It isn’t only people with dementia facing these hugely difficult decisions, it’s their partners, parents, sons and daughters too. NHS care is provided according to need and is free at the point of use. As a matter of fairness, dementia care must be delivered on the same principle.  

We ask you to commit to:  

  • Publication of a clear, budgeted, plan with milestones, with reform underway this year based on your manifesto promises for the 2021 election
  • Ensuring your reforms consider not just funding, but also improving the quality of care that people receive

We look forward to hearing how you plan to ensure that the needs of people with dementia are front and centre in your reforms.  

Best wishes,  

Kate Lee  
Chief Executive, Alzheimer’s Society 

Annwyl Brif Weinidog Cymru,

Rŵan hyn, ni allwn iacháu dementia - ond fe allwch chi iacháu’n cyfundrefn ofal. Mae’n rhaid i’r diwygiadau gofal cymdeithasol rydych yn eu cyflwyno roi blaenoriaeth i’r angen am ofal dementia sydd o ansawdd uchel, sy’n rhad ac am ddim lle y’i defnyddir.  

Gwnaeth mwy na 35,000 o bobl yn y Deyrnas Unedig â dementia farw o’r haint Covid-19, ac mae pobl sy’n byw â dementia wedi profi dirywiad sylweddol yn eu cyflwr oherwydd, i raddau helaeth, gofal iechyd a chymdeithasol y tarfwyd arno.  Ar ôl pymtheng mis mor ddifrodus, bydd gweddnewid gofal dementia yn gorfod bod yn un o ganlyniadau mawr y pandemig.  

Mae ar o leiaf 70% o breswylwyr cartrefi gofal ac oddeutu 60% o ddefnyddwyr gofal cartref ryw fath o ddementia, sy’n golygu bod yn rhaid i gynlluniau diwygio ar gyfer gofal cymdeithasol flaenoriaethu anghenion y bobl yr effeithir arnynt gan ddementia.  Oherwydd rhesymau megis diffyg hyfforddiant sy’n benodol i ddementia ar gyfer staff gofal sy’n gweithio’n galed, a’r datgysylltiad sy’n parhau rhwng y GIG a gofal cymdeithasol, mae’r gyfundrefn gofal cymdeithasol yn ei chael hi’n anodd darparu’r gofal dementia o ansawdd uchel sy’n canolbwyntio ar yr unigolyn y mae pobl yn ei haeddu. Mae’n rhaid i ddiwygio gofal cymdeithasol arwain at well deilliannau i bobl yr effeithir arnynt gan dementia.  

Mae cael at gymorth seibiant ar yr adeg iawn yn caniatáu i ofalwyr sy’n deulu ofalu am eu lles eu hunain, ac mae’n sicrhau y gall pobl â dementia aros yn eu cartrefi eu hunain yn hwy.  Mae gormod o ofalwyr sy’n deulu yn cyrraedd man o argyfwng cyn derbyn cymorth.  Heb y cymorth iawn, mae diagnosis o ddementia yn difetha mwy nag un bywyd, wrth i deuluoedd frwydro am y gofal iawn iddynt eu hunain a’u hanwyliaid.   

Gall costau gofal dementia fod yn ddinistriol.  Fel yr eglurodd y Prif Weinidog ar garreg drws Stryd Downing yn 2019, gorfodir pobl i werthu’u cartrefi i dalu am ofal.  Nid dim ond pobl â dementia sy’n wynebu’r penderfyniadau aruthrol anodd hyn, ond hefyd eu cymheiriaid, eu rhieni, eu meibion a’u merched hefyd. Darperir gofal y GIG yn unol ag angen ac mae’n rhad ac am ddim lle y’i defnyddir.  Fel mater o degwch, mae’n rhaid darparu gofal dementia ar yr un egwyddor.  

Gofynnwn ichi ymrwymo i:  

• Cyhoeddi cynllun eglur, wedi’i gyllidebu, â cherrig milltir iddo, gan ddechrau diwygio eleni, yn seiliedig ar addewidion eich maniffesto ar gyfer etholiad 2021. 
• Sicrhau bod eich diwygiadau nid yn unig yn ystyried cyllido ond hefyd gwella ansawdd y gofal y mae pobl yn ei dderbyn.  

Edrychwn ymlaen at glywed sut rydych yn bwriadu sicrhau bod anghenion pobl â dementia yn flaenoriaeth ac yn ganolog yn eich diwygiadau.  

Dymuniadau gorau,  

Kate Lee  
Prif Weithredwr, Alzheimer’s Society 

Read letter to the Joint First Ministers of Northern Ireland

Dear First Minister Foster and Deputy First Minister O’Neill,   

Right now, we can’t cure dementia – but you can cure our care system.  The ongoing radical reform and improvement of social care here must prioritise the need for high-quality dementia care.   

More than 35,000 people with dementia across England, Wales and Northern Ireland have died of Covid-19, and people living with dementia have experienced significant deterioration in their condition due in large part to interrupted health and social care. NISRA’s publications indicate that those living with dementia have been worst hit both in terms of deaths associated directly with the virus and the ‘excess’ deaths recorded during the pandemic. After such a devastating fifteen months, transforming dementia care must be the legacy of the pandemic.   

At least 70% of care home residents and approximately 60% of domiciliary care users have some form of dementia, meaning that reform plans for social care must prioritise the needs of people affected by dementia. Due to reasons such as a lack of dementia-specific training for hard-working care staff and the fact that there is no consistent dementia pathway across the various Health Trusts here, the social care system struggles to provide the high-quality, person-centred dementia care that people deserve. Reforming social care must result in improved outcomes for people affected by dementia.   

Accessing respite support at the right time allows family carers to maintain their wellbeing, and ensures people with dementia can stay in their own homes for longer. Too many family carers reach a point of crisis before receiving help. Without the correct support, a dementia diagnosis claims more than one life as families battle for the right care for themselves and their loved ones.    

Dementia care costs can be devastating. As the Prime Minister explained on the steps of Downing Street in 2019, people are being forced to sell their homes to pay for care. It isn’t only people with dementia facing these hugely difficult decisions, it’s their partners, parents, sons and daughters too. Health care is provided according to need and is free at the point of use. As a matter of fairness, dementia care must be delivered on the same principle.     

We ask you to commit to:   

  • Ensuring the NI Executive makes dementia a standalone priority in the ongoing reform of adult social care
  • Resourcing and implementing the Regional Dementia Care Pathway published in March 2018  

We look forward to hearing how the NI Executive plans to ensure that the needs of people with dementia are front and centre as we look towards life after this pandemic and rebuild the health service.

Best wishes,   

Bernadine McCrory
Northern Ireland Country Director, Alzheimer’s Society 

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