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Our campaigning work during the Coronavirus pandemic

Mental health and social care support

Coronavirus Action Day

For Coronavirus Action Day on 1 March 2021, we collaborated with tide, Alzheimer’s Society and John’s Campaign to highlight how Covid-19 has disproportionately impacted so many families affected by dementia and to call for better national and local government support.

John Levy, who cares for his wife with young onset Alzheimer’s, shares his experience of caring throughout the pandemic and why the situation needs to improve for unpaid carers and the people with dementia they support. Read John’s story here.

Covid-19's long tail

Whilst society will see some normality over the next few months, the long tail of Covid-19 will still be felt strongly in dementia care. Paul Edwards, Director of Clinical Services at Dementia UK, reflects on the impact of the pandemic, now and into the future. Read Paul’s blog here.

To mark the second anniversary of the first UK lockdown, we reflect, with 69 other organisations, on the toll Covid-19 has taken and continues to take, on people throughout the country.

Mental health and wellbeing

The pandemic has placed undue pressures on the mental health and wellbeing of people with dementia and family carers. Many unpaid carers are older and self-isolating and are having to undertake 24/7 caring responsibilities with little or no access to support or respite. We have written to both the Minister and Shadow Minister for Mental Health with our concerns.

Care and Support Alliance

Many families are struggling in their caring roles with little or no social care support. This is of great concern to us and we are working as part of the Care and Support Alliance to ensure that families are able to access the care that they so urgently need during the pandemic.

Our work around care homes

Family visits to care homes

Dementia UK wrote to Matt Hancock, Secretary of State for Health and Social Care, with our recommendations for safe visiting for care homes. We believe this is achievable if there is a collaborative approach between the government, local public health teams, care providers and families. View the letter here.

Dementia UK has developed a one-page flow chart with recommended steps to help safe visiting to resume, and steps to be taken if an area is in local lockdown. View our recommendations here.

Dementia UK welcomes this open letter from infection prevention and control experts highlighting why infection prevention and control should not be a barrier to safe, compassionate care and interaction in nursing, care and residential homes.

Letter to Matt Hancock with our recommendations for safe visiting for care homes

‘One Dementia Voice’ calls for families to be allowed to visit relatives with dementia in care homes

Dementia UK, John’s Campaign, Innovations in Dementia, TIDE (Together in Dementia Everyday), YoungDementia UK, Alzheimer’s Society and Alzheimer’s Research UK, have come together as ‘One Dementia Voice’ to call on the Secretary of State for Health and Social Care and the Prime Minister to grant family carers safe access to care homes.

People with dementia have been hardest hit by the COVID-19 pandemic. Those in care homes have been disproportionately at risk of contracting and dying from COVID-19. The Admiral Nurses on our Helpline have been taking calls throughout lockdown from desperate relatives, unable to visit the person they love. Many have been unable to see or speak to their relative at all – not even by video call or through a window. This can be catastrophic for a person with dementia, for whom familiarity and routine are very important.

Letter to the Secretary of State for Health and Social Care from One Dementia Voice

All Party Paliamentary Group (APPG) on Coronavirus

The All Party Parliamentary Group (APPG) on Coronavirus aims to examine the UK’s handling of the coronavirus outbreak so that lessons can be learnt to improve the UK’s response and preparedness in future.

Dementia UK submitted written evidence to the APPG about the impact of Covid-19 on families affected by dementia as well as the impact on health and social care nursing professionals.

Paul Edwards, Director of Clinical Services at Dementia UK was invited to the APPG’s Oral Evidence Session on 3rd November to highlight the issues and our recommendations. The interim report which contains findings based on written and oral evidence has been published and can be found here.

Access to resources and financial support

Access to essential food supplies

Many families affected by dementia have faced challenges accessing essential food supplies because of the need to self isolate or shield.

Dementia UK is working with the Department of Environment, Food and Rural Affairs (DEFRA), supermarkets and other charities to ensure that all vulnerable groups, including people affected by dementia, have access to the food supplies they need, or are better supported if they need to shop in-store.

The government has now published updated guidance on how to access essential food supplies which you can view here.

If you’re not able to go out to get supplies and if you are not able to get support from others, you are advised to either:

  • Contact your Local Authority who may be able to support you or signpost you to support. You can find your Local Authority here.
  • People who are vulnerable can also self-refer to the NHS Volunteer Scheme to get help with shopping and medication delivery. You can call 0808 196 3646 or visit this website.

If you continue to experience issues accessing food supplies then please do get in touch with us.

Joint letter on unfair costs to safely access food

People who are most vulnerable to Covid-19 and need to access food safely face financial strain due to the costs associated with securing delivery slots.

On 18 January 2021, Dementia UK joined 21 other charities and co-signed a letter to the seven participating supermarkets in the priority delivery slots scheme, calling them to suspend the unfair delivery charges and to reduce minimum spends on priority delivery slots.

Read our letter to the supermarkets here.

Access to testing and PPE

Improved and ongoing access to PPE and testing for care home residents and staff is crucial to ensure the safety of some of the most vulnerable members of our society. Dementia UK also strongly believe that families should have access to PPE to visit their relatives in care homes.  We wrote to the Secretary of State for Health and Social Care calling on the government to urgently and consistently address this issue.

Financial support for unpaid carers

Dementia UK joined 91 other charities calling for more financial support for unpaid carers. On Friday 3rd July 2020 we signed an open letter to the Work and Pensions Secretary, Rt Hon Therese Coffey MP, and Chancellor, Rt Hon Rishi Sunak MP highlighting the financial impact that Covid-19 has had on family carers and urgently calling for an increase in Carer’s Allowance.

Four months on and we have as yet had no response to the letter. Dementia UK and 74 other organisations have joined together again to amplify our previous call on the Government to recognise the financial impact Covid-19 continues to have on people caring around the clock for family members and friends. Read our latest open letter urging the Work and Pensions Secretary and Chancellor to recognise the financial difficulties that unpaid carers are facing and introduce a supplement to Carer’s Allowance.

Join the campaign's network

Join Dementia UK’s Campaigns Network and together we can help improve the care and support available to families affected by dementia

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Share your experiences

By sharing your experiences, and highlighting the urgent need for improved dementia care and support, you can help us put pressure on the government and local decision-makers to improve life for families affected by dementia

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